It'sAllTurnedToSh*t - want to talk about meds?

[BosomsByTheSea]

It's me

Hi, thanks very much for meeting me! Just wondered what you had been on prior to ttc, and how it has been coming off. Did pregnancy cause your arthritis to go into remission? Is it RA you have? Sorry for all the questions! DH has psoratic arthritis (similir disease to RA, which MIL has) and its taken a long time to get it under control, and now he has to come off meds! DS is 2.3 and really want to try to 2nd baby. He is cimin goff metho and Humire for 3 mths prior to 'trying'!

Hi,
I have psoriatic arthritis too. I am 35 now, has PA since I was 21. Mostly in hands, wrists, ankles and feet but also general all over stiffness and pain.

We had quite a lot of fertility problems (we think due to my overactive immune system) and I was treated with steroids and IV IViG from 2 weeks - 32 weeks pg. My arthritis went into complete remission when I was pg and only returned when my DTs were about 5 months old. Prior to ttc (which took us 6 years, so I was a long time off the drugs) I was on sulphasalazine - but it didn't seem to help much. I used a lot of painkillers (though sometimes they didn't touch it), wrist and finger splints and relied on my wonderful DH.

Now, I'm still bf and on Naproxen, 30/500 co-codamol (I restrict these to 4 per day as they are addictive, and try to take paracetamol instead if I can). My PA is active and causing joint damage, especially in my feet and hands. My specialist says methotrexate might help but I need to stop bf before I can have it. So I'm trying to bf the boys to 1 year and then weaning them off and starting the drugs.

It's really hard to deal with the pain, I imagine it would be hard for your DH with your 2 year old needing to be picked up, strapped into car seat etc.

On a practical note, we got the Kiddi Comfort car seats for the boys - they work on the seat belt so much easier for arthritic fingers to manage.

Sorry I've rambled - is that any help?

Really helpful and great to talk to you. DH has been on Humira (an anti-TNF injection) since last June, following metho being not enough and joint damage progressing. Humira was was wonderful initially then stopped working after just a few months. Turned out his immune system was blocking it so once he went back onto metho alongside it, it became effective again. So it all good now and we are both worried abou thim coming off the drugs. I haven't heard of IViG - is that something he could have while ttc (presumably it is if you had it while pregnant). Can I also ask, how long were you told to come off metho prior to ttc?

I'm sorry you are suffering so much, its so horrific. Glad you have a good DH. Is there a family history of it? Having arthritis that is, not having good DH's.

Sorry your dh is suffering too.
IViG is a transfusion (white blood cell proteins) and can be used to treat arthritis, but it is horrifically expensive and I think only available privately.

I wasn't on metho before ttc, but they do use it to treat ectopic pg and iirc you have to leave it a year before ttc again after being treated with it. It may be less for a man as sperm have a relatively short shelf-life (if you see what I mean). Can you check with your gp - I think there's a book that tells you about all the drugs and their effect on embryos.

My dad had psoriasis and my gran had RA. I am really hoping the metho works for me - it was so amazing being pain-free. Interestingly, though I didn't have it, humira is also one of the treatments for women with recurrent miscarriage when overactive immune system is suspected.

(to clarify, we had the IVig privately on the recommendation of our fertility consultant, as part of our last shot at having a baby before we gave up. I read around about the treatment first and that's when I found out it could be used for arthritis. I only ever had it to maintain the pregnancy though.)

oh, rules out IViG then!

Guidelines for metho according to DH's consultant is 3 mths minimum, ideally 6 mths. Sperm has a 'turn around' of 3 mths! So 6 mths is to be doubly sure you are not going to get any sperm which has been affected by metho. We are planning to wait 3 mths as 6 seems incomprehensible to us both, all that pain just waiting. I am banking on conceiving quickly so he can go back on ASAP (took a while with DS1 though).
My MIL (RA since about 30) has been on metho for 25 years and it has just stopped being as effective recently, so she is now on Embryl (sp?) which is similiar to humira. I think metho is very good if it works for you though DH did get every cold/bug going for a about a year when he was first on it - not so good!
DH's dad has psoriasis. Took years for DH's diagnosis though, they even ruled out RA! He spent a lot of time with a physio as they thought he had damaged his joints playing Playstation

oh, I wondered why you were on it if your PA was in remission

• yes, it was me who came up with my diagnosis originally - they thought it was leaning too hard on the handlebars of my bike that was making my hands so painful

PA is quite uncommon, I think. Glad your dh has found a treatment that works - does the disease go into 'remission' totally, or is it just a bit less bad? I am really hopeful that I could be back to 'normal' again.

Yup - IViG was part of the baby plan, no way we could have afforded it on a regular basis - that's why we decided only to have one go.

Well it never went into remission totally for him but I know it can - we and docs were hopeful. His quality of life on metho was good but sadly it didn't work that well for very long (3 years?), which is why he went onto Humira and now is (was) on both. He has been helped partly I think by the fact that he has a good relationship with the Reumatolgy Dept. (s'cuse spelling!) due to his mother knowing them so well. I think Humira and other anti-TNFs are expensive and they don't prescribe them very readily but perhaps fought quite hard for DH as they 'know' him. Very sad if that is how it is but I fear it is (good for us obv.) Point is, if you think metho isn't making you as good as you want to be, or minimising joint damage, ask for something else and push hard for it. You are so young and, with twins, so needed!
BTW, bf twins for a year is impressive I managed a year with one and was proud!
LOl at pressing too hard on handlebars. Genuinely lol-ing at that one!

thank you. I am pleased we made it this far

Anyhow, would like to carry on bf longer but now the boys are so heavy I am struggling to pick them up - time to compromise!

I'll take 3 years of improvement to start with!! I still have some steroids left and sometimes take them for a couple of days just to have a break

Good to hear your dh's positive experience of his treatment. Thank you