Re: HELP Middle finger with persistant inflammation

[Guest guest]

Sorry this is really brief but can't type much.

My thoughts are seeing a Occupational therapist to work on the ROM issues and to look at options to prevent damage... esp. if there is some. The finger joints are difficult to inject.... and steriods can also lead to joint damage as well... so I think that's the problem... which is going to be potentially less damaging.... the disease process or the steriods injected especialy in small joint spaces.

Sometimes some joints are so stubborn to responding to mess. I know someone on the same meds for her severe uveitis and its working wonders for that and doing nothing for her joints as well so not sure what to say there..

Issadora

On Mon, Apr 14, 2008 at 10:17 PM, mommyslp <mommyslp@...> wrote:

My daughter was dx pauci June 2006. We had her knee injected with amazing results in August of 2006 and never looked back. However her middle finger continues to be unchanged. It is quite swollen and has decreased range of motion but she never complains. Then again the day

she got up and couldn't walk at 19months old she never complained either. She is on Methotrexate injections weekly at 15 mg and Humira 20mg injections twice a month. Both are working wonders on controlling

her uveitis. I am just amazed that these drugs have not been able to reduce the swelling at all in her finger. It has been 5 months since adding Humira to the MTX mix. So now we are coming up on two years of an inflammed finger my daughter is now 3.5 years old. My Rheumy has

informed us he is leaving just as we were thinking of having the finger injected. We have been discouraged from doing this over the past two years due to the smallness of the joint being difficult to inject. Our

Rheum suggested getting the finger x-rayed to see if there is permanant damage. I will be very upset if there is and we didn't inject this finger sooner.Does anyone have any ideas/suggestions?Cheri

-- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

Hi Cheri - I am sorry I can't help at all with your question, but

after reading that your daughters eye's are controlled on Mtx and

Humira I have a question for you.

In November Grant started on Mtx for his Uveitis. He had anywhere

from 1-7 cells in each eye on various visits. That is why we

started the Mtx to get rid of these few cells so we could taper the

pred drops. After switching to mtx injection in January, 4 weeks

later his eyes were clear. Now his last visit he had 3 cells in

each eye. So we can't taper the drops anymore.

Is your daughter completely inflammation free on the Mtx and

Humira? (no cells at all) And does she take the pred forte drops

too? Both the Opth and rheumy think its okay where he is at. I

don't know if I am though. Would it be okay for a child without

Uveitis to have 3 cells in each eye? I don't think so. Just

curious as to how " controlled " her uveitis is.

Thanks! & Grant (11,PsA/Uveitis)

>

> > My daughter was dx pauci June 2006. We had her knee injected

with

> > amazing results in August of 2006 and never looked back. However

her

> > middle finger continues to be unchanged. It is quite swollen and

has

> > decreased range of motion but she never complains. Then again

the day

> > she got up and couldn't walk at 19months old she never complained

> > either. She is on Methotrexate injections weekly at 15 mg and

Humira

> > 20mg injections twice a month. Both are working wonders on

controlling

> > her uveitis. I am just amazed that these drugs have not been

able to

> > reduce the swelling at all in her finger. It has been 5 months

since

> > adding Humira to the MTX mix. So now we are coming up on two

years of

> > an inflammed finger my daughter is now 3.5 years old. My Rheumy

has

> > informed us he is leaving just as we were thinking of having the

finger

> > injected. We have been discouraged from doing this over the past

two

> > years due to the smallness of the joint being difficult to

inject. Our

> > Rheum suggested getting the finger x-rayed to see if there is

permanant

> > damage. I will be very upset if there is and we didn't inject

this

> > finger sooner.

> > Does anyone have any ideas/suggestions?

> > Cheri

> >

> >

> >

>

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphosis of growth and this flutter of

wings is

> within me awaiting to find a space to find it's flow...

>

[Guest guest]

karnen:

you need a new rheumy and ophthalmologists!!!! it is NOT okay to tolerated ANY cells.....PERIOD!

every day with cells means permanent vision loss. please visit dr. c. stephen foster's website asap (uveitis.org) and keep looking for a rheumy and opth (better yet a ocular immunologist!) who will follow dr. foster's algorithm. we had to push and change docs several times (cincnnati, chicago, columbus.....)and thank goodness we did as anabelle has been of drops completely since 11/07!!!

dr. foster's website gives a list of ocular immunologists worldwide so i am confident you will be able to find one within a reasonable distance. better yet, if you can get to Boston to see dr. foster in person please do it!!

we started on naproxsyn which didn't work. then we also failed on mobic. then mtx worked for a short while alone and ultimately failed. we avoided enbrel as it has been shown to CAUSE uveitis (although it also works for some) and then went with Humira which has worked like a miracle in combination with mtx for anabelle.

as a doctor myself i cannot stress enough how proactive you must be in your child's health care. i was absolutely floored by the misinformation we were given along the way to find the right team for our anabelle. doctors with advanced degrees giving us blatant mis-information which would have ABSOLUTELY left anabelle partially blind if not completely blind.

bottom line: NO CELLS, NO DROPS.

it is a very scary journey but once educated and with the right team on your side you will both do great!

hang in there and please feel free to contact us anytime.

neal (anabelle, JIA/Uveitis 3yo)

Lemmerman Periodontics, L.L.C.

J. Lemmerman D.M.D.

Neal E. Lemmerman D.M.D., M.S.

Diplomate of American Academy of Periodontology

1299 Kemper Meadow Dr 7109 Hamilton Mason Rd

Cincinnati, OH 45240 West Chester, OH 45069

513-851-9292 513-759-5800

FAX: 513-851-9316 FAX: 513-759-7975

www.lemmermanperiodontics.com

[Guest guest]

Hi ,

I guess my first question to you would be what is the dosage of MTX Grant is on? We started at 5mg then 7.5 (failed tapers along the way)and built up to 15mg. It worked very briefly maybe 4 weeks then we were disappointed to find out she became active again. Dr. made the decision to move on to something else. He really felt that MTX was not going to be the answer for our Anabelle. He did say we could give it more time but we couldn't increase her dosage past 15mg based on her lab results. If her liver was tolerating it ok the next step might have been to increase her dosage to 20mg. JTime is of the essence with this disease....... so we decided to move on. It was a difficult decsion. It went against our Rheum wishes and of course as parents we hated to added an even more powerful drug to the mix for our then 2

year old.

That is why I ask what the dosage is and how are his blood labs ie. AST,ALT etc. Maybe it is as simple as increasing the dosage. Our Rheum was not happy with "letting" Anabelle take more than 7.5mg of MTX. In fact he told me that he would never give a child anabelles size more than 7.5. Dr. won that one and we got her on 15mg.

My husband (who replied earlier) is right drops are never ok to use a means to keep uveitis inactive longterm. They do serve a purpose but should not be used long term. You must find something else to quiet the eyes. When our Opth in Cincinnati told us that we could maintain Anabelle on pred forte eye drop indefinetely I I knew we needed to RUN!! The drops are great for getting flares under control and to use while finding a drug that will work. Don't laugh but I can tell you since her initial uveitis dx on March 2, 2007 she has had 407 drop in the left eye and 374 in the right. Studies have shown first signs of cateract to develop after just 750 to 950 drops. so we treated each drop as getting closer to a bad side effect. Our mission became to get her off the drops and give her as few as possible. I don't mean to scare you but it

is a long process with lots of Dr. visits. I was seeing our opth every 8 to 10 days at one point. it was worth every drive 90mins to see this Dr in Columbus. We added Humira to the mix and after 3 injections (given every other week) Anabelle was inactive. Anabelle's last eye drop was on Nov 9th, 2007. Our goal is for her to remain inactive for 2 years on these drugs then begin the taper of mtx first then Humira. Please email me anytime c.lemmerman@...

I will also email you my phone number if you would like to talk more. In my early panic stricken days of this disease I was able to survive and remain hopeful through others who provided so much guidance and even therapeutic listening I hate to hear of children losing ANY eyesight to this terrible disease.

We have detailed Anabelle's treatmetn on www.carepages.com under the page name Anabelle2007 . It will walk you through our treatment month by month.

You are right to question. Your instinct is a wonderful tool too. We just had her eyes checked today and still inactive so we are coming up on 6 months on a medicated remission. We get her eyes checked every 4 weeks and see Dr. every 6 months as long as she stays inactive.

Let me know if you have ANY more questions. Sometimes you learn the most from others walking a similar path. Hang in there!

Cheri

Re: HELP Middle finger with persistant inflammation

Hi Cheri - I am sorry I can't help at all with your question, but after reading that your daughters eye's are controlled on Mtx and Humira I have a question for you. In November Grant started on Mtx for his Uveitis. He had anywhere from 1-7 cells in each eye on various visits. That is why we started the Mtx to get rid of these few cells so we could taper the pred drops. After switching to mtx injection in January, 4 weeks later his eyes were clear. Now his last visit he had 3 cells in each eye. So we can't taper the drops anymore. Is your daughter completely inflammation free on the Mtx and Humira? (no cells at all) And does she take the pred forte drops too? Both the Opth and rheumy think its okay where he is at. I don't know if I am though. Would it be okay for a child without Uveitis to have 3 cells in each eye? I don't think so. Just curious as to how "controlled" her uveitis

is.Thanks! & Grant (11,PsA/Uveitis)> > > My daughter was dx pauci June 2006. We had her knee injected with> > amazing results in August of 2006 and never looked back. However her> > middle finger continues to be unchanged. It is quite swollen and has> > decreased range of motion but she never complains. Then again the day> > she got up and couldn't walk at 19months old she never complained> > either. She is on Methotrexate injections weekly at 15 mg and Humira> > 20mg injections twice a month. Both are working wonders on controlling> > her uveitis. I am just amazed that these drugs have not been able to> > reduce the swelling at all in her finger.

It has been 5 months since> > adding Humira to the MTX mix. So now we are coming up on two years of> > an inflammed finger my daughter is now 3.5 years old. My Rheumy has> > informed us he is leaving just as we were thinking of having the finger> > injected. We have been discouraged from doing this over the past two> > years due to the smallness of the joint being difficult to inject. Our> > Rheum suggested getting the finger x-rayed to see if there is permanant> > damage. I will be very upset if there is and we didn't inject this> > finger sooner.> > Does anyone have any ideas/suggestions?> > Cheri> >> > > >> > > > -- > "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI-> Silver and Cold).> > my Flight in life

is a metamorphosis of growth and this flutter of wings is> within me awaiting to find a space to find it's flow...>

between 0000-00-00 and 9999-99-99

[Guest guest]

Thanks Cheri & Neal for the response, I really appreciate it. I am

very familiar with Dr. . Actually had an appt. set up with

him last December, but cancelled it when our Rheumy agreed to start

the MTX. Grant is on 17.5 mg/week of MTX injection. Labs have all

been just fine. I'm not familiar with AST & ALT but have been told

labs are fine. Our Rheumy said the max for him would be 30

mg/week. He probably would do it if I insisted, however I am not

the doctor! I don't feel that I should be the one to say how much

MTX he goes on. Maybe I will have to though. Grant takes 1 drop in

each eye every other day. The Opth said that this small of a dose

takes a long time to do damage and then with the rheumy saying 3

cells is okay, I start to wonder if I am just over reacting. He

already has the start of a cataract in one eye and other damage from

years and years of undetected inflammation. Grant started on drops

in Oct. of 2006 so he probably has had 450-500 drops!!! Starting

another drug like Humira scares me a lot. MTX didn't scare me but

that does. Does belle have side effects with that? Also does

she need the drugs at all for her JIA? I am going to look at your

website regarding her treatment and let you know if I have any more

questions.

Thanks for sharing your experience!!

& Grant (11, PsA/Uveitis)

> >

> > > My daughter was dx pauci June 2006. We had her knee injected

> with

> > > amazing results in August of 2006 and never looked back.

However

> her

> > > middle finger continues to be unchanged. It is quite swollen

and

> has

> > > decreased range of motion but she never complains. Then again

> the day

> > > she got up and couldn't walk at 19months old she never

complained

> > > either. She is on Methotrexate injections weekly at 15 mg and

> Humira

> > > 20mg injections twice a month. Both are working wonders on

> controlling

> > > her uveitis. I am just amazed that these drugs have not been

> able to

> > > reduce the swelling at all in her finger. It has been 5 months

> since

> > > adding Humira to the MTX mix. So now we are coming up on two

> years of

> > > an inflammed finger my daughter is now 3.5 years old. My

Rheumy

> has

> > > informed us he is leaving just as we were thinking of having

the

> finger

> > > injected. We have been discouraged from doing this over the

past

> two

> > > years due to the smallness of the joint being difficult to

> inject. Our

> > > Rheum suggested getting the finger x-rayed to see if there is

> permanant

> > > damage. I will be very upset if there is and we didn't inject

> this

> > > finger sooner.

> > > Does anyone have any ideas/suggestions?

> > > Cheri

> > >

> > >

> > >

> >

> >

> >

> > --

> > " Life- Like the flutter of wings... feel your hollow wings

> rushing... " (AFI-

> > Silver and Cold).

> >

> > my Flight in life is a metamorphosis of growth and this flutter

of

> wings is

> > within me awaiting to find a space to find it's flow...

> >

>

>

>

>

>

>

_____________________________________________________________________

_______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

karen:

glad to share. i know cheri has elaborated on this more but cataract starts usually around the 700 drop level (as you mentioned your son has already started to develop). the problem becomes as far as I understand is that uveitis patients are not good candidates for cataract surgery; therefore, once the cataract forms your son will likely be permanently blind.

Hence, the decision becomes starting a scary drug like Humira (anabelle luckily has had no side effects) or watching your son literally go blind. Terrible choice either way as a parent and we hold our breath daily that the poisons we pump into our precious anabelle weekly will put her uveitis into permanent remission.

I know I said it before but you really need to meet Dr. personally. It will make you feel much better......

I am sure Cheri will also respond but please contact us with any other concerns. By the way, where city are you in?

Neal

Lemmerman Periodontics, L.L.C.

J. Lemmerman D.M.D.

Neal E. Lemmerman D.M.D., M.S.

Diplomate of American Academy of Periodontology

1299 Kemper Meadow Dr 7109 Hamilton Mason Rd

Cincinnati, OH 45240 West Chester, OH 45069

513-851-9292 513-759-5800

FAX: 513-851-9316 FAX: 513-759-7975

www.lemmermanperiodontics.com

[Guest guest]

Neil - I live in Minnesota. I know there are 2 on Dr. s list

from there but I don't trust the list. I know one only believes in

drops and the other isn't an occular immunologist. I didn't know

about cataract surgery not being an option. I'll have to look into

that further.

>

> karen:

>

> glad to share. i know cheri has elaborated on this more but

cataract starts usually around the 700 drop level (as you mentioned

your son has already started to develop). the problem becomes as

far as I understand is that uveitis patients are not good candidates

for cataract surgery; therefore, once the cataract forms your son

will likely be permanently blind.

>

> Hence, the decision becomes starting a scary drug like Humira

(anabelle luckily has had no side effects) or watching your son

literally go blind. Terrible choice either way as a parent and we

hold our breath daily that the poisons we pump into our precious

anabelle weekly will put her uveitis into permanent remission.

>

> I know I said it before but you really need to meet Dr.

personally. It will make you feel much better......

>

> I am sure Cheri will also respond but please contact us with any

other concerns. By the way, where city are you in?

>

> Neal

>

>

>

> Lemmerman Periodontics, L.L.C.

> J. Lemmerman D.M.D.

> Neal E. Lemmerman D.M.D., M.S.

> Diplomate of American Academy of Periodontology

> 1299 Kemper Meadow Dr 7109 Hamilton Mason Rd

> Cincinnati, OH 45240 West Chester, OH 45069

> 513-851-9292 513-759-5800

> FAX: 513-851-9316 FAX: 513-759-7975

> www.lemmermanperiodontics.com

>

>

[Guest guest]

HI ,

I want to start by saying you are never over re-acting when there are cells and active uveitis in your child's eyes. I can't stand the laid back attitude that it takes a long time for steroid drops to do damage. These children have their whole life with these eyes. So every drop counts and every drop should be thought of as such. Perhaps that is why I had Anabelles eyes looked at so frequently evey 10 to 14 days. If I could taper down a drop 4 days earlier that is less steroid drops she is getting than if I waited 3 to 4 weeks to be seen!! I have to also comment that it is important to remember that the Rheum is not the expert with uveitis. While they may be managing the dosage of the drugs they should not be making the decision as what is best for the eyes. I remember when we were trying to make the very difficult decision

to up the MTX to 15mg, My Rhuem said to me "You are getting outside my comfort zone". Now remember this a Rheum from Cincinnati Children's Medical Center who has a reputation for being one of the best facitlities but not for treating UVEITIS. I agree you should not be the one to say what the dosage is. Your opth should be guiding you and presenting with you options i.e. up dosage, time to move one, try one more taper of steroids etc. Hopefully your opthalmologist is also an ocular immunigologist with specialty training in uveitis (i.e. fellowship in uveitis). We listen to Dr. for this one. We ultimately had to disagree with our Rheum recommendation and TRUST Dr. . It was scary but we did it. Dr. told us to fire our Rheum but we ultimately did not. Our Rheum while out of his comfort zone did not fire us either! Humira is not an easy road as far as

administering it. It is is painful injection that lingers for 10 to 20 mins after injection. Anabelle said/cried last Friday night, "I don't want the burny shot" I told her "honey it is the easy shot!" and she calmed down immediately and said "ok". I still tear up as I hold her down and my husband pushes the humira in. Anabelle screams and cries but this drug has HALTED the use of steriod drops. I am not sure how long you have given MTX to work at the highest dose but MTX only works for 60% of those with uveitis so it is important to realize you might fall in the 40% and need to find something else to work. Don't be afraid to move on (when all factors tell you it is the right thing to do), be more afraid to waste too much time on something that is not working.

Again call or write anytime you need to.

Cheri

Re: HELP Middle finger with persistant inflammation

Thanks Cheri & Neal for the response, I really appreciate it. I am very familiar with Dr. . Actually had an appt. set up with him last December, but cancelled it when our Rheumy agreed to start the MTX. Grant is on 17.5 mg/week of MTX injection. Labs have all been just fine. I'm not familiar with AST & ALT but have been told labs are fine. Our Rheumy said the max for him would be 30 mg/week. He probably would do it if I insisted, however I am not the doctor! I don't feel that I should be the one to say how much MTX he goes on. Maybe I will have to though. Grant takes 1 drop in each eye every other day. The Opth said that this small of a dose takes a long time to do damage and then with the rheumy saying 3 cells is okay, I start to wonder if I am just over reacting. He already has the start of a cataract in one eye and other damage from years and years of undetected inflammation. Grant

started on drops in Oct. of 2006 so he probably has had 450-500 drops!!! Starting another drug like Humira scares me a lot. MTX didn't scare me but that does. Does belle have side effects with that? Also does she need the drugs at all for her JIA? I am going to look at your website regarding her treatment and let you know if I have any more questions.Thanks for sharing your experience!! & Grant (11, PsA/Uveitis)> > > > > My daughter was dx pauci June 2006. We had her knee injected > with> > > amazing results in August of 2006 and never looked back. However > her> > > middle finger continues to be unchanged. It is quite swollen and > has> > > decreased range of motion but she never complains. Then again > the day> > > she got up and couldn't walk at 19months old she never complained> > > either. She is on Methotrexate injections weekly at 15 mg and > Humira> > > 20mg injections twice a month. Both are working wonders on > controlling> > > her uveitis. I am

just amazed that these drugs have not been > able to> > > reduce the swelling at all in her finger. It has been 5 months > since> > > adding Humira to the MTX mix. So now we are coming up on two > years of> > > an inflammed finger my daughter is now 3.5 years old. My Rheumy > has> > > informed us he is leaving just as we were thinking of having the > finger> > > injected. We have been discouraged from doing this over the past > two> > > years due to the smallness of the joint being difficult to > inject. Our> > > Rheum suggested getting the finger x-rayed to see if there is > permanant> > > damage. I will be very upset if there is and we didn't inject > this> > > finger sooner.> > > Does anyone have any ideas/suggestions?> > >

Cheri> > >> > > > > >> > > > > > > > -- > > "Life- Like the flutter of wings... feel your hollow wings > rushing..." (AFI-> > Silver and Cold).> > > > my Flight in life is a metamorphosis of growth and this flutter of > wings is> > within me awaiting to find a space to find it's flow...> >> > > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Cateract surgery is a option if that develops. However, it is much more tricky/complicated procedure when uveitis is involved. Never listen to a Dr. that says they can just operate on the Cateract. You want a Dr. who doesn't want to get that far. Surgery invited the inflammation that you are trying so hard to get out.

I agree with you on list. We had a guy in Cincinnati listed that after investigating him only treat patient everyother month at Children's. Now how much uveitis is he seeing? He did have a fellowhip in uveitis as well but this was obviously not the guy for our Anabelle. You want someone who does this all the time and sees a lot of it and isnt' so booked you can't get an appointment. It is a science even detecting it. We had a fellow working under Dr. tell us that Anabelle was active when she was not. This Fellow had been practicing for 4 years before starting this fellowship with Dr. !!! Scary! He mixed up seeing pigment cells and calling them inflammation cells.

Finding a Dr. you can trust is hard bottom line. Be persisitent and get second third opinions. Ask right up front their philosphy in treating Uveitis. Our somewhat local opth (Columbus) is also wonderful. He now understand that I am coming when I want to. He used to tell me follow up in 6 weeks and I say, see you in four. Now when the tech as him when is follow up? He says jokingly "ask mom" So I come every 4 weeks and for the first time I am waiting 5 weeks for her next appointment. Baby steps

Cheri

Re: HELP Middle finger with persistant inflammation

Neil - I live in Minnesota. I know there are 2 on Dr. s list from there but I don't trust the list. I know one only believes in drops and the other isn't an occular immunologist. I didn't know about cataract surgery not being an option. I'll have to look into that further.>> karen:> > glad to share. i know cheri has elaborated on this more but cataract starts usually around the 700 drop level (as you mentioned your son has already started to develop). the problem becomes as far as I understand is that uveitis patients are not good candidates for cataract surgery; therefore, once the cataract forms your son will likely be permanently blind.> >

Hence, the decision becomes starting a scary drug like Humira (anabelle luckily has had no side effects) or watching your son literally go blind. Terrible choice either way as a parent and we hold our breath daily that the poisons we pump into our precious anabelle weekly will put her uveitis into permanent remission.> > I know I said it before but you really need to meet Dr. personally. It will make you feel much better......> > I am sure Cheri will also respond but please contact us with any other concerns. By the way, where city are you in?> > Neal> > > > Lemmerman Periodontics, L.L.C.> J. Lemmerman D.M.D.> Neal E. Lemmerman D.M.D., M.S.> Diplomate of American Academy of Periodontology> 1299 Kemper Meadow Dr 7109 Hamilton Mason Rd> Cincinnati, OH 45240 West Chester, OH 45069> 513-851-9292

513-759-5800> FAX: 513-851-9316 FAX: 513-759-7975> www.lemmermanperiod ontics.com> >