Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi Caroline, Hang tuff sweetie,while next week seems so far away it's soo close. Been in your shoes way more then once. was started out on high doses of pred and rapidly tapered 3mg a week until systemic flare.At some point near the 18 month mark they stoped but his lft ankle was rebellious. could never get below 9mg without things turning bad.I remember him being at 8 mg and life stunk.He stayed that way for atleast a month,suffering and basicly sitting on the side lines watching the other kids play. One morning he woke up like his thighs had been slapped(The notorious stills rash was back,with a vengance)I called the ped rheumy about moving my then 3 yr old to 25mg MTX,his little max.That evening suffereed a big flare.One moment he was playing with the neighbor child and the next minuite he was creeping on his belly,unable to support weight on his wrists ,elbows, and his knees.He didn't want to be touched or held due to severe Myalgas.No touching him allowed.Went to give pm Motrin and his hands were stuck in claw positions. So sorry to get so long winded.It sounds like Caroline has hit her minimum dose of steroids.It's either time to wait it out with no taper without change in meds or change,and or add another drug.It is so hard to watch your baby in pain but be very careful about the steroids. It's so hard watching your baby in pain and can do nothing about it,other then having the power of the pred.I advise against it,let the ped rheumy see that this and that are not enough.The quicker the control the better.Do your home work about Enbrel/Etanercept,that will most likely be the next step. Lotas of hugs and prayers Becki and 5sytemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Thanks Becki... I called her doctor and she is having us add Motrin 3 times a day and additionally giving a dosage of Tylenol and Benadryl at bedtime to help her sleep. We aren't going to restart the PM prednisone yet. She wants to wait until next week when we see her to decide on that. I am not sure if Motrin is the right course because of her sensitive liver, but our rheumy seems to think she should be able to handle it... This stubborn disease! Just when you think you have it licked it under control it knocks you back on your butt! I agree that we might have to look into another medication. Our rheumy mentioned Enbrel last time we were in. Because of Caroline's age and her sensitivity to NSAIDS there are so few liquid meds she can take. I'm trying not to think of injectables right now. Methotrexate is enough for now and we are able to give that orally. I just can't imagine giving a two year old a shot. I am sure there are lots of people on this board who have done it to their little ones, but oh my!!! We'll wait and see! Alia and Caroline, age 2, poly and uveitis Re: Caroline " mini -flare " Hi Caroline, Hang tuff sweetie,while next week seems so far away it's soo close. Been in your shoes way more then once. was started out on high doses of pred and rapidly tapered 3mg a week until systemic flare.At some point near the 18 month mark they stoped but his lft ankle was rebellious. could never get below 9mg without things turning bad.I remember him being at 8 mg and life stunk.He stayed that way for atleast a month,suffering and basicly sitting on the side lines watching the other kids play. One morning he woke up like his thighs had been slapped(The notorious stills rash was back,with a vengance)I called the ped rheumy about moving my then 3 yr old to 25mg MTX,his little max.That evening suffereed a big flare.One moment he was playing with the neighbor child and the next minuite he was creeping on his belly,unable to support weight on his wrists ,elbows, and his knees.He didn't want to be touched or held due to severe Myalgas.No touching him allowed.Went to give pm Motrin and his hands were stuck in claw positions. So sorry to get so long winded.It sounds like Caroline has hit her minimum dose of steroids.It's either time to wait it out with no taper without change in meds or change,and or add another drug.It is so hard to watch your baby in pain but be very careful about the steroids. It's so hard watching your baby in pain and can do nothing about it,other then having the power of the pred.I advise against it,let the ped rheumy see that this and that are not enough.The quicker the control the better.Do your home work about Enbrel/Etanercept,that will most likely be the next step. Lotas of hugs and prayers Becki and 5sytemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 -Alia, IM so sorry to read that dear little Caroline is having a tough time with the taper. It does suck. I swear I feel like Ill never gwer Nick off the prednisone... but i just have to remember slowly slowly and we are getting there. Don't worry about giving injections... It really is much easier than you think. I was sick to my stomach when i 1st have to give Nick one, I thought I was going to pass out. But its a piece of cake now. Just remember that what you are doing is in Carolines best interests. Ill keep you guys in my prayers and hope things will calm down soon. Hugs Helen and (6,systemic) -- In , " Pranke, Alia " <Alia.Pranke@t...> wrote: > Well, we thought that we had successfully tapered Caroline off her PM > prednisone dosage because we stopped the PM dosage last week and all has > been good until Sunday. Yesterday while changing her diaper I noticed her > right knee was just a little bit on the stiff side. This morning when she > woke up her knee was visibly swollen, but she was still able to walk on it > and move it. Today she has complained three or four times that her knee > hurts and if she sits for any prolonged amount of time (10 + minutes) her > knee is stiff again.. GRR!!! We go back to her ophthalmologist Thursday and > her Rheumy next Friday so we think the best thing to do is to see what > happens in the interim... Any advice?! > > Has anyone else experience this kind of re-occurrence so long after > tapering? > > > Alia and Caroline, age 2, poly/uveitis > > GO T-WOLVES!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Thanks Helen. It is VERY frustrating to say the least. I think that Becki is correct in saying that Caroline's reached her minimun level or steroids and that we will more than likely have to add another med. I've been following Nick's prednisone taper hoping that all is well. Let me know how he is handling it. Alia and Caroline, age 2, poly and uveitis Re: Caroline " mini -flare " -Alia, IM so sorry to read that dear little Caroline is having a tough time with the taper. It does suck. I swear I feel like Ill never gwer Nick off the prednisone... but i just have to remember slowly slowly and we are getting there. Don't worry about giving injections... It really is much easier than you think. I was sick to my stomach when i 1st have to give Nick one, I thought I was going to pass out. But its a piece of cake now. Just remember that what you are doing is in Carolines best interests. Ill keep you guys in my prayers and hope things will calm down soon. Hugs Helen and (6,systemic) -- In , " Pranke, Alia " <Alia.Pranke@t...> wrote: > Well, we thought that we had successfully tapered Caroline off her PM > prednisone dosage because we stopped the PM dosage last week and all has > been good until Sunday. Yesterday while changing her diaper I noticed her > right knee was just a little bit on the stiff side. This morning when she > woke up her knee was visibly swollen, but she was still able to walk on it > and move it. Today she has complained three or four times that her knee > hurts and if she sits for any prolonged amount of time (10 + minutes) her > knee is stiff again.. GRR!!! We go back to her ophthalmologist Thursday and > her Rheumy next Friday so we think the best thing to do is to see what > happens in the interim... Any advice?! > > Has anyone else experience this kind of re-occurrence so long after > tapering? > > > Alia and Caroline, age 2, poly/uveitis > > GO T-WOLVES!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 -HI Alia, We are still at 3.5mg.. its going ok. he did have increased problems after refusing 2 doses last week, but we had a long talk and the importance of the meds and hes been very compliant since. He did end up in the school nurses office on friday straight off the bus with sore knees. Of course he kept this a secret from me and I only found out as I had to go upto the school to collect that day from speech. He did ask the nurse if it was ok to rest at recess and not go out to play. I was proud that he reconized the fact that he needed the rest. He must of really been hurting on friday Am because I did see him using the computer and instead of using his fingers to click on the enter key, he was using the side of hand. I hate always asking him if alls ok because he does snap at me so im trying to let him tell me, but friday just proves hes not telling me everything. last night after getting home Nicks older brother was bugging him to go out and play football, but Nick turned to him and said, no i wanta go in and rest, I have a baseball game tonight and I have to save my energy. While I am happy that hes beginning to learn self limiting, it breaks my heart that a 6 year old has to think like that (( I am concerned about another sore Nick has, this time on his hand. The rhuemy was concerned about a vasculitis ulcer ( she thinks it could possibly be) on his ankle a few months ago and told me to keep a close eye on it. it did heal with the help of some cream she gave me, but took 5 weeks. At his last appt he had another " mark " on the other ankle that she told me to watch closely. Then this past weekend, Nick was resting, playing gamecube on saturday and used the palm of his hand to move the little joystick ( easier for him sometimes than using his fingers) and within a few seconds it looked like a blister with the skin missing. it literally started hurting and he rubbed it and the skin fell off. its now a sore looking just like his ankle did. I dont know weather to call the rheumy or wait till we see her next month and discuss it then. I feel im over reacting if I call, but she seemed pretty concerned about the 1st sore. ive done a little research online about vaculitis and it can be associated with RA, something about immflamation in the blood vessels, I think. But, as of yet, I havent found a good site that explains it in " Helen language " ) Anyone know anything about vasculitis that could explain it better to me?? Opps, sorry this became a novel again... Hugs Helen and (6,systemic) -- In , " Pranke, Alia " <Alia.Pranke@t...> wrote: > Thanks Helen. It is VERY frustrating to say the least. I think that Becki is > correct in saying that Caroline's reached her minimun level or steroids and > that we will more than likely have to add another med. > > I've been following Nick's prednisone taper hoping that all is well. Let me > know how he is handling it. > > Alia and Caroline, age 2, poly and uveitis > > Re: Caroline " mini -flare " > > > > -Alia, > > IM so sorry to read that dear little Caroline is having a tough time > with the taper. It does suck. I swear I feel like Ill never gwer Nick > off the prednisone... but i just have to remember slowly slowly and > we are getting there. > > Don't worry about giving injections... It really is much easier than > you think. I was sick to my stomach when i 1st have to give Nick one, > I thought I was going to pass out. But its a piece of cake now. Just > remember that what you are doing is in Carolines best interests. > > Ill keep you guys in my prayers and hope things will calm down soon. > > Hugs Helen and (6,systemic) > > > -- In , " Pranke, Alia " <Alia.Pranke@t...> > wrote: > > Well, we thought that we had successfully tapered Caroline off her > PM > > prednisone dosage because we stopped the PM dosage last week and > all has > > been good until Sunday. Yesterday while changing her diaper I > noticed her > > right knee was just a little bit on the stiff side. This morning > when she > > woke up her knee was visibly swollen, but she was still able to > walk on it > > and move it. Today she has complained three or four times that her > knee > > hurts and if she sits for any prolonged amount of time (10 + > minutes) her > > knee is stiff again.. GRR!!! We go back to her ophthalmologist > Thursday and > > her Rheumy next Friday so we think the best thing to do is to see > what > > happens in the interim... Any advice?! > > > > Has anyone else experience this kind of re-occurrence so long after > > tapering? > > > > > > Alia and Caroline, age 2, poly/uveitis > > > > GO T-WOLVES!!!!! > > > > Quote Link to comment Share on other sites More sharing options...
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