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CIDP / Methotraxate

13 replies

wouldlikesomeadvice · 16/07/2007 22:12

I would be interested to know if anyone's DP / DH has CIPD (Chronic idiopathic demyelinating Polyradicoloneuropathy - I think.)It is a autoimmunedisease that affects peripheral sensation and motor ability. My partner has had it for 20 years and it seems to be having an increasingly detrimental impact upon both his physical and mental health. He has been on methotrexate for several years and this seems to have made his mental health even worse (depression, social withdrawal, mood swings)- it is causing a terrible stress in our relationship - just wondering whether anyone out there has any similar experiences.

OP posts:
ComeOVeneer · 16/07/2007 22:15

Dh suffers from psoriasis and psoriatic arthritis (different problem but also autoimmune) he was on methotrexate, but it made in very depressed, and also seriously affected his liver so was polled of it. He is now on enbrel, doing well and no side effects. Would a change of medication be possible for your dh?

ComeOVeneer · 16/07/2007 22:16

pulled off it

wouldlikesomeadvice · 16/07/2007 22:22

Thanks for responding so quickly. DH can hardly drink any alcohol and feels very tired and unwell alot of the time on Methotrexate. His LFTS are normal although his consultant thinks that the cause of his problems is due to his liver - although the only definitive answer would be to biopsy. Will look into Enbrel - thanks.

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ComeOVeneer · 16/07/2007 22:27

DH can hardly drink any alcohol and feels very tired and unwell alot of the time on Methotrexate. His LFTS are normal although his consultant thinks that the cause of his problems is due to his liver - although the only definitive answer would be to biopsy.

Could have said exactly the same of my dh except his lfts were high. They did a can of his liver whichwas inconclusive. They pulled him off the medication then checked his LFTs regularly and they slowly returned to normal. Would it be possible for dh to be meds free for a while?

wouldlikesomeadvice · 16/07/2007 22:32

Has been off MTX once when we were trying to conceive DD 2 - he got worse symptomatically despite bumping up is steroids and unfortunately other treatments, e.g. plasma exchnge cause him risky side effects (calcium tetany) so his consultant doesn't feel able to offer them.

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mankyscotslass · 17/07/2007 07:37

DH has just come off Methotrexate for Psoriatic Arthritis, he is far hapier off them. I don't know if they caused depression as susch, but he was constantly sick and very tired on them. He is now on another med which hasnt really kicked in yet, but he is far happier.
Is there anything else the consultant recommends?

ComeOVeneer · 17/07/2007 13:38

Mankyscotlass, out of interest may I ask what meds he has been changed to?

mankyscotslass · 17/07/2007 14:40

COV, it's Hydroxychloroquine.
He is still on Sulfasalzine and Celebrex too. But at least he now only has to have 3 monthly blood tests for the sulfasalazine now, not fortnightly like on the methotrexate.
My mum is also on the Hydroxychloroquine for her Lupus.
HTH

Weegle · 17/07/2007 15:26

Again, different autoimmune disease but I take methotrexate. I haven't noticed depression as a side effect but have been extremely tired, but this is a symptom of my disease anyway. The alcohol thing isn't a problem for me as I don't really drink anyway. Can he come off methotrexate and try something else? From what I have understood with these types of drugs is their effectiveness may diminish over time anyway so sometimes a change is necessary. The worst side effect I have had is due to the reduced immunity caused by it I have had a lot of intercurrent infections and take a long time to get over things. It's a powerful drug and maybe it's time your DP reviewed his meds and maybe had a change? It must be really hard for you - can you go to see his consultant together so you feel like you're doing something about this together?

mankyscotslass · 17/07/2007 15:43

Weegle, I agree about getting all the infections going...it was another factor in DH wanting to come off the Methotrexate....in 6 mths he has had 3 bad bouts on tonsilitus and every cold or sniffle the kids brought home...work was not pleased and it definetely affected his sense of well being.

Weegle · 17/07/2007 18:01

Yes I keep having this discussion with my consultant who doesn't have kids about how I think this drug is unfeasible for those with small children because of the number of bugs being brought in to the home. It's bad enough having an autoimmune disease and the pain/problems that in itself causes let alone being laid low by the drugs which are supposed to be helping. But with these diseases it's all a balancing act and trying to get the best combination of things for disease management. But I understand it's not just tough on the patient but also on the partner who has to pick up so much more. I'm very aware of how much extra burden my DH has because he has a wife with an autoimmune disease. As an aside, wouldlikesomeadvice and others, have you looked in to the support and help you can get? We have a charity provide someone twice a week to help out with me and DS - this is to help my DH not me. You could find out if anythign similar exists in your area?

wouldlikesomeadvice · 17/07/2007 20:57

thanks everyone for all your advice / sharing your experiences - it makes me feel that I am not quite so alone in my experiences of my DP. DP unfortunately is a VERY closed book and would not be willing for me to attend an OPA with him. He finds it really hard to talk about how he feels, so it is helpful for me to hear from others just how tiring they have found MTX, at least I can try and be a bit more understanding perhaps. Another drug has been mentioned (can't remember name) so perhaps I will try and encourage DP to give it a go. Many thanks once again

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ChorusLine · 17/07/2007 22:00

I was on Methotraxate for Psoriasis for a few months but fell pregnant while on it (v scary as serious side effects but DS ok). I didn't get many side effects and it really worked for me.

They then moved me on to Enbrel - same as your DH COV - except the preganacy part.

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