Guest guest Posted November 29, 1999 Report Share Posted November 29, 1999 It's a dmard like MTX My webpages: http://fadedjeans.com/jraworld http://www.geocities.com/acnelson24 Reach me by ICQ. ICQ# 34033888 [ ] Arava Re Arava, is that a biological drug like Enbrel & Remicade or is it a regular DMARD like MTX? ------------------------------------------------------------------------------ Click Here ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 I wonder if a DMARD stops working after a while, in which case it probably wouldn't make sense to start another one till the first has stopped working. (Similar to antibiotics.) (Now that opinion may " really " be " not worth much " .) Charlie >From: Georgina <gmckin@...> >Reply- onelist > onelist >Subject: Re: [ ] Arava >Date: Tue, 30 Nov 1999 11:52:44 -1000 > >From: Georgina <gmckin@...> > >Hi Charlie, > >Yup. As I understand it, it's just another DMARD, another disease >modifying, anti-rheumatic drug. Josh already takes two: >Hydroxychloroquine (Plaquinel) and Methotrexate. If he were to start >taking Arava, not yet approved for use in children, he would first need >to discontinue and wash out the MTX. I figure it might be a good option. >He's not had any bad side effects from either of the other two and this >one might have better efficacy for him. Maybe I'll find out some more >about the possibility when we see the rheumatologist next month. > >Take care, >Georgina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Hi Charlie, Yup. As I understand it, it's just another DMARD, another disease modifying, anti-rheumatic drug. Josh already takes two: Hydroxychloroquine (Plaquinel) and Methotrexate. If he were to start taking Arava, not yet approved for use in children, he would first need to discontinue and wash out the MTX. I figure it might be a good option. He's not had any bad side effects from either of the other two and this one might have better efficacy for him. Maybe I'll find out some more about the possibility when we see the rheumatologist next month. Take care, Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi Charlie, No, it does sound like that might be the case. I know that sometimes one particular NSAID that has been effective for a long time can all of a sudden not work as well for a person. Sounds like the same night be true of DMARD's. Take care, Georgina Charlie S wrote: > I wonder if a DMARD stops working after a while, in which case it probably > wouldn't make sense to start another one till the first has stopped working. > (Similar to antibiotics.) (Now that opinion may " really " be " not worth > much " .) > Charlie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 Hi Pat, We don't have any personal experience with it (my son hasn't been on it) but I have heard quite a few people say that it was the one med that finally worked well for them. Then again, I've also heard of a couple people who didn't have a great response to it. Depending on how many responses you get here, you may also want to do a search in the group's archives ... and see what turns up there. Just go to /messages and type in Leflunomide or Arava and you should get quite a few postings about it. Under Leflunomide you'll probably get more research, medical news and journal-type posts. With the more common name, you'll most likely get more posts from parents whose children have tried it or were contemplating it. Oh, just a reminder. One thing I've noticed from people's questions about archives searches is that a lot of times people think the page that pops up is the complete search. It used to be this way when the group was thru onelist and egroups. Nowadays, with , you've got to click on next at the top or bottom of each screen to get the rest of the results. A minor inconvenience, though. It still allows you access to plenty of information. If you do try the archives feature and come across any problems, just let me know. I'll be glad to try to search out and repost some of the relevant messages that have already been posted to the group. Take care, Georgina sdbpab@... wrote: > > Has anyone used this one yet? My doc is thinking of prescribing it for > since she had the bad reaction to Remicade. It's a PILL!!!! YEA!!! > > Let me know if anyone has heard anything on this one. > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Pat, I just came back from the regional AJAO meeting, and I went to the workshop on the new drugs. Arava (and this is all from a handout given to us by Dr. Carol Wallace, a pediatric rheumy from Seattle) is stored in the body for years and years. Little is known about its metabolism. The drug in not dialyzable, meaning you can overdose, and there is no treatment for that. So you need to be careful if there are little ones in your household. It has been shown to be effective for the treatment of RA and compares favorable with mtx. It causes birth defects,and there are no long term studies to asses its effect on fertility in humans or potential to cause cnacers. It has not been tested in children. You can hasten the bodies elimination of the drug by the use of the drug cholestyramine, but Dr. Wallace says that is not a pretty process. She only gave us the dosage for adults. >From: sdbpab@... >Reply- > >Subject: Arava >Date: Sun, 26 Aug 2001 16:42:53 EDT > >Has anyone used this one yet? My doc is thinking of prescribing it for > since she had the bad reaction to Remicade. It's a PILL!!!! YEA!!! > >Let me know if anyone has heard anything on this one. > >Pat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 In a message dated 8/27/2001 10:56:34 AM Pacific Daylight Time, immasche@... writes: > . Arava (and this is all from a handout given to > us by Dr. Carol Wallace, a pediatric rheumy from Seattle) is stored in the > body for years and years. Interesting, took Arava for 1 month, ( she stopped taking it 3 months ago) it seems that it caused her stomach to burn. She still has the problem.....I hope that it doesn't go on for too long, but if it takes this long for the drug to leave your system ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 As a possibility for Meghann we are also looking at Arava (AKA leflunomide). Her rheumy Dr. E gave us a handout. It comes in 10/20/100 mg tablets... Arava helps to reduce joint pain and swelling as well as slow the progression of joint damage...normally the body's immune system fights infection, viruses, and bacteria. In RA the immune system also attacks the body's own joints, causing pain, swelling and damage in the joints. Arava helps control these symptoms and slows the disease progression. It will not cure arthritis. It may take 4 weeks or more to notice any improvement... Most common side effects: skin rash, diarrhea, hair loss, increased liver enzymes. You will need frequent lab studies initially to check the drug's effect on your liver. Abnormal liver tests may cause the doctor to reduce the dose of Arava or change to a different medication This medicine may lower your resistance to infection. Persons with known immunodeficiency or significant liver disease should not take Arava. Vaccination with live vaccines is not recommended. Females of childbearing age must use reliable birth control while taking Arava. This medicine can cause SEVERE birth defects. Do not use this medicine if you are pregnant. If you wish to become pregnant, you must stop Arava and take another drug called cholestyramine for 11 days to help remove all the Arava from the body. A blood test must also confirm the absence of Arava. Men who wish to father a child may also consider stopping arava and taking cholestyramine. ********** Personal side note---sometimes the cure can be worse than the disease. Lets face it, many of these newer drugs do not have any long term studies. It is a scary proposition at best. All we can do is decide what risks we are willing to take and hope for the best. Sharon and Meghann JRA and PRS Re: Arava > In a message dated 8/27/2001 10:56:34 AM Pacific Daylight Time, > immasche@... writes: > > > > . Arava (and this is all from a handout given to > > us by Dr. Carol Wallace, a pediatric rheumy from Seattle) is stored in the > > body for years and years. > > Interesting, took Arava for 1 month, ( she stopped taking it 3 months > ago) it seems that it caused her stomach to burn. She still has the > problem.....I hope that it doesn't go on for too long, but if it takes this > long for the drug to leave your system ..... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Yes Sharon, your so right and I would like to add another side effect of Arava, memory loss. While I was on the drug, I was more prone to forgetfulness, far more than a person my age at the time should be, and as I have always been a individual of good recall, it was very noticeable. Especially to my family and friends as well, so I promptly got off the drug and went back to methotrexate, which gives the same end results. Unfortunately we are at the mercy of the drugs, for to battle such savage deceases as jra, cancer, M.D. or ms, we are subjected to some of the most costic chemicals know to medicine. Its kind of like, to beat the Devil you've got to put a bad taste in his mouth, one that makes him wish he'd never chosen your back to bite on! But enough, pontificating from this old man, hugs and smiles to all, ESPECIALLY, Meghann. Rusty Limbs aka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hello Pat, My name is Pamela mother to r (3 w/systemic). We have tried Arava. We tried it last fall. We did not notice any side effects. We are treated at UCSF and this drug is commonly used. I have heard great things with it and you may want to look back at some previous postings. Starting any new drug is scary and testing always takes such a long time especially in kids. r has serve systemic and we did not stay on it very long (almost 3 months). We also tried Remicade with no luck. There is a new study (adults) using mthx and arava together that we may try soon. Was only using the Remicade? r had a bad reaction to solumederol ( sorry on the spelling) But his reaction was very unusual because this is a anti-reaction drug. Good Luck and I hope everything goes well, Pamela >From: sdbpab@... >Reply- > >Subject: Arava >Date: Sun, 26 Aug 2001 16:42:53 EDT > >Has anyone used this one yet? My doc is thinking of prescribing it for > since she had the bad reaction to Remicade. It's a PILL!!!! YEA!!! > >Let me know if anyone has heard anything on this one. > >Pat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Pamela, yes she tried Remicade. She was on it for about 5 months, then just last week, had a bad reaction to it, so now we are off that. She has been on MTX since the beginning. First pills, then injections, back to pills. I'm just tired of putting all these chemicals in my little girl's body. She's so fragile as it is. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Re: Arava In a message dated 8/27/2001 10:56:34 AM Pacific Daylight Time, immasche@... writes: > . Arava (and this is all from a handout given to > us by Dr. Carol Wallace, a pediatric rheumy from Seattle) is stored in the > body for years and years. Interesting, took Arava for 1 month, ( she stopped taking it 3 months ago) it seems that it caused her stomach to burn. She still has the problem.....I hope that it doesn't go on for too long, but if it takes this long for the drug to leave your system ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Hi Pat, Arava was something that we spoke about with our doctors. Josh wasn't responding as well as we had hoped and it seemed like a promising new drug that might be worthwhile trying. Some of our doctor's other (older) patients who had a similar disease course (persistent systemic) as Josh had amazing success with it. At that point, Arava was still so new that it hadn't yet been used on any child under the age of 12. Our rheumatologist said we'd have to wait at least till then, so our last ditch effort was to switch Josh from oral to subcutaneous injections of Methotrexate. Surprisingly, that seemed to do exactly what we had hoped for so we no longer had the need to try Arava. As with every other medicine out there, I've heard some people say they had a great response to it while others had very little or no response. There have been concerns about potential liver damage so, as with other DMARDs, regular bloodwork monitoring is a necessity. It stays in the body longer than some other meds but there's other meds that can be taken to speed up the washout, if there's a bad reaction. Since I don't know too much, personally, about it .... I just did a search of our group's message archives. Found one article from Medscape that pretty much covers study results that have been gathered on Arava and another article that talks about possible adverse reactions. I'll paste them in, below. You'll probably hear from others who've had personal experience with this. You can also search the archives (for Leflunomide) to see all that's been posted about it here in the past. The archives is at: /messages I hope this helps a little, Pat. I know how worrying it can be to try to decide what to try next. Good luck with your decisions. Aloha, Georgina --------------------------------------------------- JRA List Message # 12772 Subject: Leflunomide (Arava) Source: http://promini.medscape.com/drugdb/search.asp LEFLUNOMIDE Leflunomide is used for the management of the signs and symptoms of rheumatoid arthritis and to retard structural damage associated with the disease in adults with moderate to severe active rheumatoid arthritis. Leflunomide is being evaluated to determine whether the drug may have a possible role in patients undergoing transplantation, and leflunomide is designated an orphan drug by the US Food and Drug Administration (FDA) for prevention of acute and chronic rejection in solid organ transplant recipients. Leflunomide also is being investigated for use in patients with solid tumors. Rheumatoid Arthritis in Adults Leflunomide is used for the management of the signs and symptoms of rheumatoid arthritis in adults and to retard structural damage associated with the disease. Current data suggest that leflunomide is as effective as methotrexate or sulfasalazine for the management of rheumatoid arthritis in adults and may be a suitable alternative for these disease-modifying antirheumatic drugs (DMARDs); however, long-term experience with leflunomide is limited and the exact role of the drug in the management of rheumatoid arthritis remains to be determined. Leflunomide is well tolerated; toxicity is an important consideration since adverse effects are a major limitation in the use of DMARDs. Leflunomide has been used concomitantly with methotrexate in a limited number of adults with rheumatoid arthritis. Although nonsteroidal anti-inflammatory agents (NSAIAs) may be useful for initial symptomatic treatment of rheumatoid arthritis, DMARDs have the potential to reduce or prevent joint damage and should be initiated early in the disease course and should not be delayed beyond 3 months in patients with active disease receiving NSAIAs. Patients with active rheumatoid arthritis (i.e., ongoing joint pain, substantial morning stiffness, fatigue, active synovitis, persistent elevation of erythrocyte sedimentation rate [ESR] or C-reactive protein [CRP]) despite an adequate regimen of NSAIAs are candidates for therapy with a DMARD (e.g., azathioprine, etanercept, hydroxychloroquine, leflunomide, methotrexate, penicillamine, sulfasalazine, and/or oral or injectable gold compounds). Low-dose oral corticosteroid therapy also may be used in combination with DMARDs in selected patients. While many factors influence the choice of a DMARD, methotrexate has substantially greater long-term efficacy than other DMARDs and is used as the initial or anchor DMARD in many patients with rheumatoid arthritis. Because residual inflammation generally persists in patients receiving maximum dosages of a single DMARD, many rheumatoid arthritis patients are candidates for combination therapy to achieve optimum control. Although the most effective combination regimen of DMARDs has not been determined, regimens that have been found efficacious in clinical studies include combinations of methotrexate and cyclosporine, hydroxychloroquine, sulfasalazine, leflunomide, etanercept, or infliximab. Clinical Experience Clinical evaluations of leflunomide have shown that usual dosages of the drug are more effective than placebo and as effective as methotrexate or sulfasalazine in the management of rheumatoid arthritis in adults. Response to leflunomide generally occurs 1 month after initiation of therapy and maximum improvement is achieved within 3—6 months. Limited data indicate that durable responses have been maintained for up to 24 months in patients receiving leflunomide. Therapy with leflunomide reduces the number of swollen joints, pain, and duration of morning stiffness, improves the quality of life, and reduces disease activity as assessed by laboratory measures (i.e., ESR, CRP). In addition, leflunomide was more effective than placebo and as effective as methotrexate or sulfasalazine in retarding radiographic evidence of disease progression. Therapy with a Single Disease-modifying Antirheumatic Drug. Leflunomide has been evaluated for the management of rheumatoid arthritis in adults with active disease (American Rheumatism Association criteria for rheumatoid arthritis with American College of Rheumatology [ACR] functional class I, II, III or IV) in a placebo-controlled phase II study and in 3 double-blind, placebo- and active-controlled phase III studies (studies US301, MN301, and MN302). Most adults included in these studies had received prior therapy with a DMARD; however, patients were required to discontinue DMARD therapy 28—30 days prior to study enrollment. Patients receiving stable dosages of NSAIAs and/or prednisone (10 mg daily or less) at study enrollment could continue such agents during these studies. ACR criteria for a 20% improvement (ACR 20 response) in measures of disease activity was used as the principal measure of clinical response in studies evaluating the efficacy of leflunomide. An ACR 20 response is achieved if the patient experiences a 20% improvement in tender and swollen joint count, and a 20% or greater improvement in a least 3 of the following criteria: patient pain assessment, patient global assessment, physician global assessment, patient self-assessed disability, or laboratory measures of disease activity (i.e., ESR or CRP level). ACR 50 and ACR 70 responses are defined using the same criteria with a level of improvement of 50 and 70%, respectively. The Sharp Score, a composite score of erosions and joint space narrowing in hands, wrists, and forefeet, was used as the principal measure of structural damage. In study US301, 482 adults with rheumatoid arthritis (mean age: 54 years, mean disease duration: 6.7 years, mean number of DMARDs that failed: 0.8) were randomized to receive leflunomide (100 mg once daily for 3 days, then 20 mg once daily), methotrexate (7.5—15 mg once weekly), or placebo. All patients received folic acid 1 mg twice daily (to decrease methotrexate toxicity). At 12 months, an ACR 20 (intent-to-treat analysis) was achieved in 52% of patients receiving leflunomide, and an ACR 50 or 70 was achieved in 34 or 20%, respectively. An ACR 20 was observed at month 12 in 46 or 26% of patients receiving methotrexate or placebo, respectively; an ACR 50 was observed in 23 or 8%, respectively, and an ACR 70 was observed in 9 or 4% of patients, respectively. Evaluation at 12 months indicated that leflunomide therapy was associated with greater decreases in the number of tender joints (from 15.5 at baseline to 7.8), number of swollen joints (from 13.7 at baseline to 7), pain (from 5.9 at baseline to 3.7), HAQ disability index (from 1.3 at baseline to 0.85), ESR (from 38.4 mm/hour at baseline to 32.1), CRP (from 2.08 mg/dL at baseline to 1.46 mg/dL), and greater improvement in physician and patient assessments than placebo; improvement in these parameters in patients receiving leflunomide were essentially the same as that in patients receiving methotrexate. Radiographic analysis at month 12 indicated that leflunomide or methotrexate therapy was associated with less disease progression than placebo. Data from an extension of study US301 indicate that clinical and radiographic improvement observed in patients receiving leflunomide or methotrexate at 12 months was maintained at 24 months. In study MN302, 999 adults with rheumatoid arthritis (mean age: 58 years, mean disease duration: 3.75 years, mean number of DMARDs that failed: 1.1) were randomized to receive leflunomide (100 mg daily for 3 days, then 20 mg daily) or methotrexate (7.5—15mg weekly). Analysis at month 12 indicated that more patients receiving methotrexate achieved an ACR 20 than patients receiving leflunomide; the ACR 20 response rate in patients receiving leflunomide in this study was similar to the response rate reported in study US301. Improvement in the number of tender or swollen joints, pain, ESR, CRP, and physician and patient assessments observed in leflunomide-treated patients in study MN302 were similar to those observed in study US301. At month 12, disease progression as assessed by radiographic analysis in patients receiving leflunomide was similar to that in patients receiving methotrexate. In study MN301, 358 adults with rheumatoid arthritis (mean age: 58.3—58.9 years, mean disease duration: 5.7—7.6 years, 40—53% had not received prior therapy with a DMARD) were randomized to receive leflunomide (100 mg daily for 3 days, then 20 mg daily), sulfasalazine (dose increased to 2 g daily over 1—4 weeks), or placebo. At 24 weeks, an ACR 20 or ACR 50 was achieved in 48 or 30%, respectively, of patients receiving leflunomide. An ACR 20 was observed at 24 weeks in 44 or 29% of patients receiving sulfasalazine or placebo, respectively; an ACR 50 was observed in 30 or 14%, respectively. Radiographic analysis at week 24 indicated that leflunomide or sulfasalazine therapy was associated with less disease progression than placebo. Combination Therapy with Methotrexate. Leflunomide has been used concomitantly with methotrexate in a limited number of adults with rheumatoid arthritis, and there is some evidence from an open-label study that addition of leflunomide may be useful in patients who have a suboptimal response to methotrexate. However, additional study is needed to clarify the role of leflunomide in combination with methotrexate versus other therapies (e.g., changing from methotrexate to another DMARD, adding a DMARD other than leflunomide) in patients who have not responded adequately to methotrexate. Although limited data from patients with rheumatoid arthritis who received leflunomide in combination with methotrexate indicate that the adverse effect profile in patients receiving concomitant therapy with the drugs is similar to that in patients receiving either leflunomide or methotrexate, increased serum concentrations of liver enzymes are frequently observed in such patients. The manufacturer of leflunomide states that concomitant use with methotrexate has not been adequately studied in controlled settings. At least one randomized study has been initiated to evaluate the safety and efficacy of concomitant leflunomide and methotrexate therapy. ---------------------------------------------------- JRA List Message # 12770 Subject: Adverse Effects of Leflunomide (Arava) http://rheumatology.medscape.com/Medscape/rheumatology/AskExperts/2001/07/RHEU-a\ \e77.html Question How safe is leflunomide? What are we to make of recent data on its effects on the liver? Camerlain, MD Most adverse effects of leflunomide are minor, such as gastrointestinal symptoms, skin rash, alopecia, dyspepsia, hypertension, and elevated transaminases.[1,2] The drug is immunosuppressive and thus can increase the risk of infection.[1,2] Leflunomide is contraindicated in pregnancy, and patients who wish to become pregnant are generally treated with cholestyramine to enhance elimination of the drug.[3,4] Pancytopenia has been reported as a rare occurrence associated with leflunomide.[5] Unexplained weight loss in association with leflunomide treatment of rheumatoid arthritis was recently reported to be more common than previously thought and is believed to be due to the effects of leflunomide on mitochondrial adenosine triphosphate (ATP) generation.[6] Substantial recent attention has been focused on the possibility that serious liver toxicity can occur in leflunomide-treated patients.[7] Fortunately, such toxicity appears to be uncommon. However, regular monitoring of liver function during leflunomide therapy remains an important guideline, and transaminase elevations or depression of serum albumin should be taken seriously. It is not clear from the current literature whether serious hepatotoxicity associated with leflunomide is mediated by potentiation of hepatotoxicity induced by concurrently used agents (including methotrexate) or via direct actions of leflunomide on the liver. Response from Terkeltaub, MD, 07/31/01 References 1.Emery P, Breedveld FC, Lemmel EM, et al. A comparison of the efficacy and safety of leflunomide and methotrexate for the treatment of rheumatoid arthritis. Rheumatology. 2000;39:655-665. 2.Weinblatt ME, Kremer JM, Coblyn JS, et al. Pharmacokinetics, safety, and efficacy of combination treatment with methotrexate and leflunomide in patients with active rheumatoid arthritis. Arthritis Rheum. 1999;42:1322-1328. 3.Kozer E, Moretti ME, Koren G. Leflunomide: new antirheumatic drug. Effect on pregnancy outcomes. Can Fam Physician. 2001;47:721-722. 4.Brent RL. Teratogen update: reproductive risks of leflunomide (Arava); a pyrimidine synthesis inhibitor: counseling women taking leflunomide before or during pregnancy and men taking leflunomide who are contemplating fathering a child. Teratology. 2001;63:106-112. 5.Auer J, Hinterreiter M, Allinger S, Kirchgatterer A, Knoflach P. Severe pancytopenia after leflunomide in rheumatoid arthritis. Acta Med Austriaca. 2000;27:131-132. 6.Coblyn JS, Shadick N, Helfgott S. Leflunomide-associated weight loss in rheumatoid arthritis. Arthritis Rheum. 2001;44:1048-1051. 7.Weinblatt ME, Dixon JA, Falchuk KR. Serious liver disease in a patient receiving methotrexate and leflunomide. Arthritis Rheum. 2000;43:2609-2611. sdbpab@... wrote: > > Anyone familiar with this medicine? > > Pat & (1 year Systemic) > For links to websites about arthritis and JRA, visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Hello Pat, My name is Pamela and my son r (systemic 2 yrs) as just readded Arava. He is currently on Prednisone, Indomthacin, Folic Acid, Iron, Methotrexate twice a week shot, enbrel twice a week. We have tried last fall taking Ky off mthx and adding arava. When the cold months hit he became very bad. Last December we tried Remicade. We had no luck. Over past 2 years we having been getting weekly to every 2 weeks iv pulses at the hospital. r disease has been very prescident and affects ankels, knees, hips, wrists, elbows, and neck. Adding medicine is very hard and I truly know about all the hard decisons. Unfornutly with r not pushing unward would mean him quite severe and inmobile. In June we added cyclosporine. We could never seem to get rs level high enough so the doctors kept pushing up the dose. In July we tried joint injections for the second time, injecting 8 joints. I found helpful info from others members here and kept Ky off his joints for 48hrs. He felt so good and it lasted for 6weeks. His hips started acting up and he began having trouble walking again. We had to stopped the cyclo. Ky's blood pressure kept going up and it was just not working. Sorry to keep rambleing every child is so unique I just want to make sure you know where we stand. Our doctor decided to add Arava and keep Ky on Mthx. There are studies in adults using both. With Ky getting some benifit from Enbrel she did not want to stop the Enbrel. This is not studied, but we are trying it. Ky is on the 3 together and we are keeping are fingers crossed. It has been about 4weeks along with another set of joint injections and he is the happy boy walking and playing that I havent seen for so long. We have had no side effects either time using Arava. Each child is so different and the drug cocktails vary in so many ways. This is just the one we are currently using. Good Luck >From: sdbpab@... >Reply- > >Subject: Arava >Date: Tue, 16 Oct 2001 13:37:42 EDT > >Anyone familiar with this medicine? > >Pat & (1 year Systemic) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Pamela & r - wow, he is on a lot of meds. I can't believe they would use Remicade & Enbrel & Arava. That seems like way too much. tried Remicade, worked for about 5 months, then she had a bad reaction. Since then, till yesterday, she hasn't been on anything new, just MTX pills, Prednisone, folic acid and calderol. She actually was doing very well. I'm sorry r isn't responding but they say most of the meds take 8 weeks or more to start helping. You better make sure the docs can give all that at once. I pray every day and thank God that is improving. I only hope my luck doesn't run out. Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 Can someone please help me unsubscribe. I cannot handle this much email. Thanks Adverse Effects of Leflunomide (Arava) http://rheumatology.medscape.com/Medscape/rheumatology/AskExperts/2001/07/RH EU-a\e77.html Question How safe is leflunomide? What are we to make of recent data on its effects on the liver? Camerlain, MD Most adverse effects of leflunomide are minor, such as gastrointestinal symptoms, skin rash, alopecia, dyspepsia, hypertension, and elevated transaminases.[1,2] The drug is immunosuppressive and thus can increase the risk of infection.[1,2] Leflunomide is contraindicated in pregnancy, and patients who wish to become pregnant are generally treated with cholestyramine to enhance elimination of the drug.[3,4] Pancytopenia has been reported as a rare occurrence associated with leflunomide.[5] Unexplained weight loss in association with leflunomide treatment of rheumatoid arthritis was recently reported to be more common than previously thought and is believed to be due to the effects of leflunomide on mitochondrial adenosine triphosphate (ATP) generation.[6] Substantial recent attention has been focused on the possibility that serious liver toxicity can occur in leflunomide-treated patients.[7] Fortunately, such toxicity appears to be uncommon. However, regular monitoring of liver function during leflunomide therapy remains an important guideline, and transaminase elevations or depression of serum albumin should be taken seriously. It is not clear from the current literature whether serious hepatotoxicity associated with leflunomide is mediated by potentiation of hepatotoxicity induced by concurrently used agents (including methotrexate) or via direct actions of leflunomide on the liver. Response from Terkeltaub, MD, 07/31/01 References 1.Emery P, Breedveld FC, Lemmel EM, et al. A comparison of the efficacy and safety of leflunomide and methotrexate for the treatment of rheumatoid arthritis. Rheumatology. 2000;39:655-665. 2.Weinblatt ME, Kremer JM, Coblyn JS, et al. Pharmacokinetics, safety, and efficacy of combination treatment with methotrexate and leflunomide in patients with active rheumatoid arthritis. Arthritis Rheum. 1999;42:1322-1328. 3.Kozer E, Moretti ME, Koren G. Leflunomide: new antirheumatic drug. Effect on pregnancy outcomes. Can Fam Physician. 2001;47:721-722. 4.Brent RL. Teratogen update: reproductive risks of leflunomide (Arava); a pyrimidine synthesis inhibitor: counseling women taking leflunomide before or during pregnancy and men taking leflunomide who are contemplating fathering a child. Teratology. 2001;63:106-112. 5.Auer J, Hinterreiter M, Allinger S, Kirchgatterer A, Knoflach P. Severe pancytopenia after leflunomide in rheumatoid arthritis. Acta Med Austriaca. 2000;27:131-132. 6.Coblyn JS, Shadick N, Helfgott S. Leflunomide-associated weight loss in rheumatoid arthritis. Arthritis Rheum. 2001;44:1048-1051. 7.Weinblatt ME, Dixon JA, Falchuk KR. Serious liver disease in a patient receiving methotrexate and leflunomide. Arthritis Rheum. 2000;43:2609-2611. sdbpab@... wrote: > > Anyone familiar with this medicine? > > Pat & (1 year Systemic) > For links to websites about arthritis and JRA, visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 Hello Pat, r is actually no longer on remicade we tried it but after 2 doses it was not working so we did have to stop it and go back to mthx. I just noticed was on the pill form of mthx. Have you tried the shot yet from what I have learn it seems to have more affect. Yes Ky is on a lot of meds but right now that is just the way it needs to be. He is feeling so good right now and I am hoping this is the answer (Enbrel, Mthx, Arava) I am always questioning my doctors and reading anything I can get my hands on. At the Seattle conference our doctor asked if I considered Med school. I laughed I am usually so overwhelmed with my daily life I could not imagine school on top right know. I think I was questioning her on stem cell research and the latest drug trails over seas. Where are you from? We live in northern California and to UCSF for treatment. r is 3 1/2. How old is ? I am glad to hear is feeling better. Our prayers wishes go out to both of you and all the kids battling this, Pamela >From: sdbpab@... >Reply- > >Subject: Re: Arava >Date: Thu, 18 Oct 2001 19:30:53 EDT > >Pamela & r - wow, he is on a lot of meds. I can't believe they would >use >Remicade & Enbrel & Arava. That seems like way too much. tried >Remicade, worked for about 5 months, then she had a bad reaction. Since >then, till yesterday, she hasn't been on anything new, just MTX pills, >Prednisone, folic acid and calderol. She actually was doing very well. >I'm >sorry r isn't responding but they say most of the meds take 8 weeks or >more to start helping. You better make sure the docs can give all that at >once. > >I pray every day and thank God that is improving. I only hope my >luck >doesn't run out. > >Pat & (1 year Systemic) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 Pamela, yes we were on the injections for a while, but when started Remicade, (and it worked well for a while), we went back to pills. She is still on pills, but not Remicade. We are off all injections, for the time being. I think that is what has helped more, her mind-set, that she doesn't have to get shots or IV's. We live in Mundelein, Illinois, west and north of Chicago. My brother lives in Berkley. Went out there to go to school and never came back. Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 , my daughter has been on Arava for about 3 months. It has seemed to help her dramatically. After Remicade, we steered clear of injections of any kind so our doctor came up with this one. I just hope it keeps working as the weather is starting to get cold and he is worried about the effects on her. Good luck! Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Georgina - Does still get fevers or bad flairs? has been doing so well lately and I keep reading about all these other kids who are doing so badly. I wonder if I should prepare myself for a major setback since it seems like all the kids have them. Has been feeling good? Let me know. Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Georgina - wow, I guess we are truly blessed that is doing so well. I hate to talk about it, afraid I might jinx us. I don't think I could have taken it much longer either. I was at my wits end. I was not a very good patient's mother. As I look back, I feel bad that I was always so angry about it. was so sick and it wasn't her fault but when she would pee in her bed or throw up all over, I just broke down. She totally reverted back to a 2 year old and had to wear pull ups. Mainly, because she couldn't get out of bed. It was so sad and maybe God realized I couldn't handle it. I don't know. I wish I was stronger, but I'm not. But now I do know if she does get bad again, I think I can handle it a little better. Good luck to you, hope you have a good holiday (after you all get healthier!!) Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Hi Pat, will be in our thoughts. I hope she continues to do well and that the colder winter weather doesn't cause a relapse or flare for her. Take Care, Georgina Re: Arava , my daughter has been on Arava for about 3 months. It has seemed to help her dramatically. After Remicade, we steered clear of injections of any kind so our doctor came up with this one. I just hope it keeps working as the weather is starting to get cold and he is worried about the effects on her. Good luck! Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Hi , Sorry to hear that Amy showed an allergic response to the Enbrel. Was the rash the only sign of that or were her labs off, too? Did she have any other signs that something was not right? How long had she been taking Enbrel? (age 12, systemic for 6+ years) has never tried Arava. We were actually considering it, before we switched to MTX injections. If that hadn't worked as well as it did Arava is the med we would have tried next. At that time it was still very new and hadn't been approved yet for pediatric use. He would have needed to wait till he was 12 to begin. I sure hope this works well for Amy, and that she's able to tolerate it well. Do let us know what happens, okay? Take Care, Georgina Has anyone had their child use this new drug. Amy went to her ped rheumy yesterday and they determined the rash that she has is an allergic reaction to the Enbrel and have taken her off of it. They are going to try her on Arava in a few weeks, as she needs something more than just Methotrexate.The literature sounds good, and its not an injectible, which makes Amy happy. I was just wondering if anyone has used this drug before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Hi Pat, If this makes any sense, when Josh first got JRA it came on like a violent storm. He was severely sick. Full on systemic symptoms and many affected joints. That first flare seemed to last for, literally, years. He continued to do poorly despite taking steroids, MTX, NSAIDs, Plaquinel, etc. I think he was what they call a non-responder. Or probably, better yet, a low responder. He responded to the meds but the periods of active arthritis were still much more prominent. The meds were never able to fully controlled the symptoms. As time went on, he had some good days in between. His arthritis was still very active though. He had fevers and rash throughout the first five years. In the beginning, twice a day. Morning and night. Gradually, the pattern started changing. He'd have a couple fever free days here and there. Then more. Suddenly, even less than that. Once we switched to MTX injections. Now Josh has more ordinary arthritis. It's quieted down a lot. There are still some days when he'll be achey all over and he'll have joint stiffness in the morning, sometimes again in the evening. Just one particular joint will be bothersome for him, though, instead of several areas at a time. Usually his ankles or wrists, or an elbow but it varies. His rash only appears on his thighs now, versus thighs, arms, chest, back ... like when he was lots more sick. We don't take his temperature nearly as often, anymore. We used to do that several times a day, for years it seemed. Fevers were so frequent that if his temp was 102 or less, he could still usually make it into school. Late, but he'd still go in once he started feeling a little better. Usually a couple hours after his morning meds. His temp was often as high as 105-106. He didn't have a whole lot of energy but he was able to do what he needed to do. That was just the way life was, once the JRA began. Now, things are very different. We're ready for small setbacks as they occur but I think the worst of it is over. At least I hope so. Hopefully he'll be able to continue the steroid taper with no major problems. We always had such a hard time before but this time, it seems to be working out. I'll feel like he's really doing well once he no longer has a need for the prednisone. That's our biggest milestone to cross. If his arthritis symptoms can be controlled with just the NSAID and DMARDs that he takes, it will feel like we've conquered it : ) I never realistically thought we'd reach this stage. I used to think 's arthritis would remain hard to treat forever. Now I come to find out that it just took us a bit longer than most : ) Aloha, Georgina Re: Arava Georgina - Does still get fevers or bad flairs? has been doing so well lately and I keep reading about all these other kids who are doing so badly. I wonder if I should prepare myself for a major setback since it seems like all the kids have them. Has been feeling good? Let me know. Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 Hi Pat, Of course we hope that it never gets bad again but you're right. We are better prepared to handle whatever happens next once we've had some first-hand experience to learn from. Take Care, Georgina Georgina - wow, I guess we are truly blessed that is doing so well. I hate to talk about it, afraid I might jinx us. I don't think I could have taken it much longer either. I was at my wits end. I was not a very good patient's mother. As I look back, I feel bad that I was always so angry about it. was so sick and it wasn't her fault but when she would pee in her bed or throw up all over, I just broke down. She totally reverted back to a 2 year old and had to wear pull ups. Mainly, because she couldn't get out of bed. It was so sad and maybe God realized I couldn't handle it. I don't know. I wish I was stronger, but I'm not. But now I do know if she does get bad again, I think I can handle it a little better. Good luck to you, hope you have a good holiday (after you all get healthier!!) Pat & (1 year Systemic) Quote Link to comment Share on other sites More sharing options...
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