I've been following this forum for a while now, but this is my first post so it's a rather long.
I live in Switzerland and have had PA for over 20 years now (I'm 54 and it runs in the family).
The doctors here let me have injections every 3 weeks but have no idea about the active and inactive forms of B12 and correct testing ! Don't ask what my various test results are because I don't have any!
I also have psoriasis arthritis which has badly affected my hands/fingers with the result that my finger joints look like those of a 90year old and I cannot even open a bottle anymore
The 2 rheumatologists I have seen want me to take methotrexate but I am very wary of how this will affect my stomach, my folate levels (I take 5mg every day anyway otherwise I get really bad heart palpitations) and also my B12 levels.
I have confirmed polyneuropathy in hands and feet and don't know if this is a result of B12 deficiency (despite the 3-weekly injections) or due to the polyarthritis.
Does anyone here have experience of taking methotrexate with confirmed autoimmune PA? I'm really worried about trying it out as the last time I stopped taking the folate tablets I nearly had a heart attack!
Would love to hear from anyone with advice and also anyone from Switzerland who has found a doctor who understands PA and its full effects on the blood/nerves etc.
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flowerjuice
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Hello flowerjuice. I'm not quite sure what you mean by safe? That’s a big question.
I have B12 deficiency, Barrett’s Oesophagus, Lupus and was more recently diagnosed with psoriatic arthritis too. In the last six years I've taken hydroxychloriquine (an anti-malarial that helps control lupus symptoms), azothioprine, mycophenolate , and methotrexate for the last 18 months (immunosuppressants).
The immunosuppressants are used in lower doses than when used for chemotherapy or following organ transplant and are also know as disease-modifying anti-rheumatic (DMARDS). They work to 'modify' disease - slow it down or stop it progressing (they take up to six months to work fully).
In the case of psoriatic arthritis, they would help to slow disease progression considerably and prevent further permanent arthritic damage to your joints (they obviously wouldn’t cure any damage that’s already occurred). Since it sounds like you have quite a lot of damage already, I guess that you might want to prevent anymore? Taking DMARDS would be the best option to do this (there are many options other than methotrexate and anti TNF Alfa antibodies would be the next level of treatment if immunosuppressants don’t work). You don’t mention if your feet are involved too - though painful, mine are not damaged yet - I'd like to try and keep those in good working order.
About methotrexate - this is know as an anti-folate drug - all the reference material suggests that it may not be suitable for those with low folate levels (though mine have been low and folate levels haven’t been a problem). Rheumatologist in the U.K. routinely prescribe folate, usually at 5mg a day for the six days after taking methotrexate (it’s a once a week dose). It’s also possible to have this as a subcutaneous injection (metoject) once a week, self-injected at home. (This is how I get mine - very easy to do, painless, you would be taught to do it). This might be a good option for you if you’re worried about GI side effects, since it obviously bypasses the GI tract (I use metoject because of the Barrett’s).
NOTE OF CAUTION: Do not take PPI's with methotrexate - major drug interaction warning - can cause chronic methotrexate toxicity (I got caught by that).
In terms of B12 - my rheumatologist told me it was very important to make sure to continue with B12 injections (I was impressed that she knew this - not many seem to) - all of the drugs I have taken are safe with vitamin B12 - none have made any difference to the frequency of injections I need.
In terms of treating the psoriatic arthritis, my view is that I will take whatever medication works to suppress disease activity and slow progression (it’s a systemic disease so there are other symptoms to - not just arthritis - so I'd like to control them as much as possible to).
About the 5mg folic acid you take to stop palpitations - just wondering if this is on medical advice? Supplementing with folate in high doses if there is no underlying deficiency can cause neurological damage, which may be irreversible. And the palpitation may need investigation if this has not already been done. This is certainly something you should discuss with your rheumatologist - especially if you plan to go ahead with the (anti-folate drug) methotrexate.
My progressive SFN, polyneuropathy and autonomic dysregualtion is due to Lupus, rather than B12 deficiency.
It seems that there are not many doctors who understand PA or the B12 deficiency it causes. Many do find that if they get the right treatment early enough and continue to keep symptoms at bay, they can live a relatively healthy and symptom free life.
From my point of view, the lupus and the psoriatic arthritis has a much more significant impact on my health and making sure that I have an appropriate treatment plan for those conditions is my main concern. I self-inject B12 with medics approval and take H2O Antagonists for the Barrett’s. All other treatments (including steroids) are for symptom relief and control of systemic autoimmune conditions.
So… I've rattled on a bit simply because I've been where you are - trying to make a decision about whether to take what are very powerful drugs. For me, the decision turned out to be very easy - I was too ill not to - I wanted to get some quality of life back. Interestingly, some of the symptoms I had thought due to B12 deficiency turned out to be due to underlying systemic autoimmune disease - which I didn’t realise until I started on treatment for that (might be something for you to consider).
So…I've rattled some more. I think the bottom line is that if two rheumatologist are wanting you to take any form of immunosuppression, there must be a very good reason - they don’t prescribe these drugs lightly. And again, from my perspective, the systemic autoimmune disease has been far more troublesome - and difficult to control - than the B12 deficiency (ABNegPA) ever was.
Have you been able to have a proper conversation about your worries about the safety issues with your rheumatologist? I'm sure that talking to them openly about your fears would enable them to address your concerns and their advice would help you to make an informed decision about the best treatment plan for you.
Very best of luck and I sincerely hope that you manage to settle on a treatment plan that works for you. x
P.s forgot to say…I’ve read that psoriatic arthritis can cause GI issues, so treating the psoriatic arthritis may bring improvements to your GI issues x
Lovely to hear from you again: I hope you are feeling a bit better.
Purple-Flower Sorry it tagged the wrong person and won't delete the link now.
I have cared for someone with psoriatic arthritis and was also impressed by the rheumatology development (although they didn't know to test for B12 before supplementing with folate, even if it is to get back to base). The methotrexate was very useful but there are several other immunosuppressants that do not have quite as drastic a folate depleting effect.
The other issue you might have is that the reason you don't take folic acid on the methotrexate day is that folic acid impairs the effect of the methotrexate so if you have to supplement anyway, you might not get the full benefit from the methotrexate.
flowerjuice please see the paragraph above too - sorry, I have terrible trouble with tags on HU!
I too have problems with folate absorption (and heart arrhythmias) and know that when I had trimethoprim (an antibiotic that pulls folate out of your system) I glibly thought "that'll be OK - I have my own supplies and can just take more to balance it"! Not a good idea! I went from needing around 5mg per day to 20+ mg per day for about 8 months. I need methylfolate rather than just folic acid (which are expensive and only available as 1mg tablets) so I was popping tablets all the time and it was costing me a fortune!
I am aware of a specific arrhythmia (from researching ECG traces) which results from low folate - or actually, even more specifically, folic acid deficiency - and therefore I would suggest that your cardiology team would be the best place to start as far as the discussions go. They will be able to recognise the specific problem and suggest what to do.
When dealing with each health care department it is vital that you speak your concerns about medicine interactions - just because they are super-clued up on what they do know, it doesn't mean they know about everything else. They usually freely admit it and will talk to other departments to get advice and guidance.
I have thought about your problem from my own point of view in the past and I thought if faced with it, I would chose to try all the other options first and then only try methotrexate under close monitoring if all the medical teams thought it my only option (it very rarely is).
As far as the B12 goes, I don't think there is a significant problem, other than B12 works with folate and if your folate levels drop too low, so that it becomes the limiting factor, the B12 stops working properly and no matter how much you inject, you will still have the effect of being B12 deficient.
Hi deniseinmilden.Thanks for your tip about the folate deficiency and palpitations possible link. Unfortunately the heart specialist who I did see a while back just said that as long as my heart just keeps doing "double beats" I should be happy !! sort of on the basis... better two for one instead of none at all. - really reassuring when I had the feeling that I was having a heart attack about three times a day and a resting pulse of 95.
I then self-diagnosed and started taking folate tablets and since then my palpitations have reduced to almost zero and my resting pulse is down to about 70 ! However, I am now worried that the polyneuropathy may be down to the folate tablets.
I'm going to see a new rheumatologist end of Sept, so hopefully I might get some appropriate treatment and information at last.
Not surprised - even my rheumatologist didn’t - despite pharmacist and GP advice that this was so. I had to log in to a drug interaction checker and show him!
Hi Foggyme. Thanks for all your great tips ! Here in Switzerland I keep getting shoved back and fore from immunologists to rheumatologists with the end result that I end up "falling" in the gap in between
The last rheumatologist prescribed me methotrexate but all further checks and follow ups after taking it were to then be carried out by my GP. As I have absolutely no trust in my GP, I didn't start taking the methotrexate (my GP when he took over the practice told me I didn't need any B12 injections even though I had confirmed autoimmune PA for over 12 years previously !!! So you can see why I don't trust him !)
I now have an appointment to see a different rheumatologist in the regional hospital... hopefully this one will have more interest/understanding of my problems. Also there they will be able to hopefully look at the bigger picture with other specialists available on location.
Unfortunately, as you say, the damage already done cannot be repaired so I have to live now with "granny" fingers forever Luckily my feet haven't really started yet although I do have one rheumatoid nodule on one toe..., but no pain yet.
Will let you know how things turn out... In the meantime, I've upped my does of predinsolon to 10mg instead of 5mg so that I can keep on functioning.
I have PA and PsA and have to advise you that the damage done by PsA is permanent. If you need something to stop PsA, then methotrexate is the first DMARD most of us are offered. For some it is a wonder drug and for others like me, in tablet form it was a disaster. If possible use injectable Mtx which is much less hard on your stomach. It would take me forever to list the drugs I have taken over the years: DMARDS, Biologics, JAC INHIBITORS. I am currently using Stelara every 12 weeks, with a 7.5 Mtx injection weekly then folic acid two days after that. I’ve been hospitalised recently with PE in both lungs but have been assured that it’s nothing to do with the PsA drugs. We have to make hard choices☹️ I’ve chosen to take meds that allow me to walk and move now and I’ve accepted they may be life limiting. The pain I’ve experienced when having to stop my drugs for surgery assures me my choice was right for me. Now I have to take blood thinners and my heart has been damaged because I thought my breathlessness was due to extreme heat and being overweight. The struggle is real and each day is a gift. I wish you luck on your journey but PsA had to be curtailed ASAP. 💕
This is not to replace the advice that others have given above, of course, but to let you know that there are other lifestyle changes you can make to slow (or sometimes stop) the progression of autoimmune disease.
The Autoimmune Protocol is a way of eating/living that has helped many people (myself included) reduce and sometimes eliminate the need for medication by removing the triggers for immune flares, rather than or in addition to suppressing the immune system with DMARDS, and to help heal gut issues which are a symptom of and a contributor to autoimmune disease. Studies done so far have demonstrated its efficacy with inflammatory bowel disease, and many other studies are underway, and there are scores of patients who have reported using the protocol to treat or help treat dozens of autoimmune conditions, including psoriatic arthritis. Here is but one story from someone who had been recently diagnosed.
This is not to dissuade you from DMARDS but they are often presented as the only option, and at any rate, it is an uphill battle for them to work against a continuously triggered immune system. They were the only option for my partner when he was diagnosed with RA at age 30, and they didn't work for him. I am sad I didn't know about AIP then, but I am glad people are finding relief from it now.
Hi lynxisThanks for your tip about diet.... I have already considered this as I now my body doesn't "like" wheat and various other carbs so I try to stick as far as possible to a Mediterranean style diet. However when I'm feeling down (which is very often at the moment!) then I tend to overboard on the dark chocolate
Will try to persuade my new rheumatologist to maybe send me to a dietician....
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Luckily my feet haven't really started yet although I do have one rheumatoid nodule on one toe..., but no pain yet.
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