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Leflunomide wash out Options
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neidin
#1 Posted : Sunday, June 12, 2011 3:55:32 PM Quote
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Hi all,
Havn't posted for ages but have been keeping up with things on the forum.
I am on Rituxmab, have had 3 courses over the last two years.
Was taking Mtx 20mgs for three years until I developed a rare form of Mtx toxicity which lead to severe neutropenia and tissue damage which resulted in me needing to have my cervix removed last september, pathology report confirmed Mtx toxicity!

I went on a drug holiday for 6 months too afraid to take anything, as I had bad reactions to Hydroxochloriquine and Sulph.
As always happens the RA got worse so they suggested I try Leflunomide 20mgs with 2 weekly monitoring in February this year.
All was well and I moved to monthly bloods.
In April I started to get eczema on my palms, got some cream for it. Then 3weeks ago I developed a rash on my arms, neck, face and complete disintragition of the skin on my hands., the rash was so bad my husband asked me if I could have leprosy!

Saw the rheumy and I was put on an 11 day drug washout regime with Colestyramine. I finish the washouts today.

Just wondering if anyone else has had to have Colestyramine? And if it worked?
My arms and neck are much better but my hands are still bad, I have to wear cotton gloves all the time and lots and lost of cream.

Hope I haven't put anyone off the drugs. I am prone to eczema so maybe I am more allergic then normalSad


Best wishes
Roisin
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dorat
#2 Posted : Sunday, June 12, 2011 4:39:26 PM Quote
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Hi Roisin,

Good to see you back on here, but what a dreadful time you have had.
I'm not certain but I think Jenni has had the washout for Leflunamide, hope someone can help you anyway.
Have they said what is next for you in terms of drugs? I don't blame you for being frightened to try them with the reactions you've had!
Hope you can find something that you are not allergic to and will help with your RA.

Love, Doreen xx
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jenni_b
#3 Posted : Sunday, June 12, 2011 4:44:01 PM Quote
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Hello and Im ever so sorry to read that you have had such a rotten reaction to the drugs.

I have had wash out for leflunomide and it worked fine.

the wash out wasnt very pleasant tho!

they tested once shortly after and one about 6 wks or so after. Then I was clear.

There is another lady on here who had a similar nasty skin reaction after humira.

it was very painful for her and in the end they said she had developed pustular psorisis I think it was.

I am not doing too well after the last drug Ive had either- I seem to have allergicy reactions to alot of them. My diabetic dr explained that because the drugs for the RA, we have are immune tackling, you are more likely to notice a more allergic reaction to them.

Jenni x
how to be a velvet bulldoser
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neidin
#4 Posted : Sunday, June 12, 2011 7:31:51 PM Quote
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Thank you Doreen and Jenni,
I was beginning to feel a bit of a freak being allergic to so many of the drugs. My rheumy had never had to use the washout before and he retired the day after I saw him!
He said I could have the Rituximab with Cyclophosphimide in the future, but I'm not sure how I feel about that.

Jenni I am very sorry to hear about your resent setback. You seem to have been so unlucky with the drugs. Have they looked into the new stem cell treatment which they are trying in the US and Japan?
I an going to look into a spa treatment they have in Baden- Baden for Arthritis before I agree to anymore drugs. But I know once the crippling pain starts again I will take anything!

Take care,
Roisin
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jenni_b
#5 Posted : Sunday, June 12, 2011 7:51:40 PM Quote
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I think this is it Roisin, when you are having so many prbs on the drugs you think "right! I wont have any more then!" and then within a few wks you will beg and take anything. miserable awful disease this is- and to think some people think its moaning old ladies with an achy hip who need to lay off the gin! Grrrrr it really bites with me when things are so bad and really it runs my entire life!

Cyclophosphimide I have seen used in patients with skin prbs to do with psoriatic arthritis.

RTX is something they now use a lot- with a lot of success in RA patients I know but it was the worst response (apart from anaphalaxis on the tocilizumab) for me. I have never fully recovered from that one- had such probs on the biologics and it seems all the newer drugs coming on stream are all biologic ones.

My consultant cant understand why I have prbs with so many of the biologic drugs as they are all different and work differently. Well. there must be something in there thats the prob.
they are all called biologics for a start!

I have declined to look at stem cells treatments before because of the fact that they came from aborted babies and I couldnt bear that. Now it seems that they are taking from placentas from live births (I gave Bernice's placenta for scientific use) and from other sources but that sort of thing is important to me- no matter how awful the pain I couldnt take from such a miserable human position. Thats my opinion- I understand why others wouldnt necessarily share that position.

Currently, Im in a position where Im going to attempt the new drug Abatacept again but this time they can give me steroid and anti-histamine before it goes through.

there is a prblem with my lungs and they cant tell whether its the Abatacept or the RA causing it but I need to have a CT scan.

deep joy!

tHE LADY I know who had such awful probs with the skin things went to India for some intensive skin treatments and it did her the world of good.

The other thing to do is to consider asking to be referred to Bath hospital for rheumatic disease for inpatient assessment. They will take you in for about 3 wks and do "the works"! they believe in the old and new treatments working together and their physio/ hydro team are second to none.

Jenni xx
how to be a velvet bulldoser
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neidin
#6 Posted : Sunday, June 12, 2011 8:16:36 PM Quote
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Gosh Jenni, I didn't know know about the aborted featous. I agree with you I couldn't do that
I will bare in mind a referral to Bath only problem would be childcare while there.

How do you cope with such severe disease? You must have such a sunny disposition to still remain sane through all the systemic problems and setbacks. You truly are remarkable.
Than you for replying

Roisin
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dorat
#7 Posted : Sunday, June 12, 2011 9:16:48 PM Quote
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Jenni is an inspiration to us all!

Do you mind me asking Roisin, how did you find out that your cervix was affected by the mtx? I have never heard of that, is there anything we should be looking out for?
Sorry it's such a personal question but we do need to be aware if this can happen.

Doreen xx
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Rose-B
#8 Posted : Sunday, June 12, 2011 10:04:53 PM Quote
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Hello there,


So sorry to hear about your problems my heart goes out to you and also Jenni.

I do so hope that you get a drug that is going to be suitable for you soon that you will not
be allergic to.

Take care

Rose
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neidin
#9 Posted : Monday, June 13, 2011 9:51:33 PM Quote
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Hi Doreen,
It started with copious discharge and pelvic pain. Had swabs taken all clear. Internal tissue was very inflamed.
Gynaecologist was perplexed but did some research and discovered that Mtx can cause such problems, although rare. He put me on antibiotics just in case
Six weeks passed with no improvement and on re examination the tissue was in a bad way and he did not feel it would recover.

The pathology report showed widespread inflammatory cells with eoisinphil infiltration. This led them to say that it was a severe inflammatory reaction most likely due to the Mtx and that I should never take it again.
Neither my Rheumy or gynae had come across it before. So hopefully it doesn't effect many Women with RA.

Roisin x
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dorat
#10 Posted : Monday, June 13, 2011 10:30:47 PM Quote
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Oh Roisin you poor thing,you must have really suffered with that.
What extreme bad luck that you were affected in that way by the mtx. I can really understand why you are reluctant to try drugs now.
Thanks for sharing your experience, has the pain settled down now that your cervix has been removed?

Doreen xx
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jenni_b
#11 Posted : Tuesday, June 14, 2011 8:20:08 AM Quote
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Just to say again that cervical and vagina prbs can happen on anti RA treatments. Cervical Oblations are not uncommon with steroid use and DMARDs can also cause issues. I had cervical oblations at one point when on a lot of steroids. It was really very uncomfortable and I had this sort of pessary treatment and tablets and they went. Not pleasant.

how to be a velvet bulldoser
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neidin
#12 Posted : Tuesday, June 14, 2011 10:33:36 AM Quote
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Yes thankfully after surgery everything settled down. Having been through all that it is so maddening to have all the skin issues with Leflunomide.
Seeing the rheumy nurse tomorrow. Ra isn't too bad at the moment as I had last Rituximab infusion at the end of March so hopefully I will get a bit longer out of it.

Jenni, I meant to say I have been using your traffic light system for the past year or so and it's a great tool. You would make a great like coachThumpUp

Have a good day.
Roisin
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