Psoriatic arthritis

[kathyD64]

Hello all... hope everyone is well / coping / happy.. I’ve been dipping in and out reading post and this is the first place I turn too for friendly advice as I find my self with yet another challenge .. how we all love a challenge! After vindication from fibromyalgia last year - only took 8 years 😜 with a positive response to depo medrone.. an addition to APS and my other friends psoriatic arthritis is proving some what difficult to treat.. joints in hands, sacrum feet are now quite significantly affected, methotrexate caused major migraines nausea Inr issues so was ditched after 2 weeks, meantime second depo as did the first meant I lost weight again, felt amazing to loss all those aches pains stiffness that was all part of normal living a dream! Sadly short lived as next drug mycophenolate only after 4 days now have virus, high Inr no migraines though so feeling lucky! But bad belly nausea yellow poop & diarrhoea currently stopped as liver enzymes they think affected.. oh yah kidneys poss as well now got blood protein leukocyte in urine... any one had success with anything else to treat arthritis with a disease modifying drug? Kindest regards kath xxx

[Fra22-57]

Welcome kathyD64 .I too have APS along with other diseases inc Fibromyalgia and RA.Currently on biologic Abatacept injections. I have tried 3 others plus methotrexate. Also on other meds aswell for RA Sulfasazine and Hydroxychlorine. Have you tried them.are you on warfarin for APS

[kathyD64 in reply to Fra22-57]

Ah thank you for your reply.. yes I’ve been on warfarin for 30 years and plaquenil for 5 years. I tolerate plaquenil fine. The depo injections work brilliantly but I know I can’t keep having them. I’ve not tried sulfasazine or heard of that injection x

[Fra22-57 in reply to kathyD64]

Oh.just read up on side effects of drug you taking and see can cause uncomfortable effects you are receiving. Hope you soon get some relief

[kathyD64 in reply to Fra22-57]

Thank you x

[MaryF Administrator]

Hi, I have Psoriatic Arthropathy alongside my other conditions. I am highly allergic to medication and have incidents of Stevens Johnson Syndrome. I fund my own Low Dose Naltrexone which has helped me immensely, (not prescribed on the NHS), I am also on Natural Desiccated Thyroid, I did very thorough testing to rule out Fibro, which found with superior tests that I had a severe Thyroid problem, again this is much better. However I do a lot with diet and exercise and consult a nutritional expert to make sure I am doing everything correctly, and am not on Warfarin so do not have an INR target to maintain. My diet is gluten free, with a Mediterranean style, I also maintain good levels of my B12 and other things. My biggest flare triggers are other people's strep type infections or my own hormones, in between these sort of incidents I am doing much better these days. MaryF

[kathyD64 in reply to MaryF]

Thank you Mary for your reply. X

[bookish in reply to MaryF]

Which Natural Desiccated Thyroid have you found works well for you Mary? Also, you mention hormones - so many problems seem to be exacerbated by oestrogen dominance, have you tried/had any success with bio-identical progesterone or any suggestions for alternatives, herbal or otherwise? Thank you.

[MaryF Administrator in reply to bookish]

Yes I am using transdermal natural progesterone, however all my medical consultants know about my particular medications, and yes I use Nature Throid at the moment. I don't suggest trying things out without the guidance of a good doctor, especially if on Warfarin. My path do diagnosis was very long, and I was already doing all these things for many years. You have to be so careful even with supplements, in case of contraindications with various medications. MaryF

[bookish in reply to MaryF]

Thank you Mary. I was using Wellsprings Serenity (as suggested by Dr Peatfield and after saliva testing) but started to react to one (or more) ingredients so am looking for purer alternatives. I am using thyroid glandular (again as per Dr P) but suspect I may need something else. Not on Warfarin, using tocotrienol vit E pending APS specialist appt in March.

[GinaD]

A common denominator re autoimmunity is inflammation. And a common denominator of inflammation is diet. Sugar and high glucemic carbs trigger an inflmmatory response; fasting at least 10 hours between dinner and breakfast plus low carb diet triggers the kitosis, repair mode. You might try consulting with a nutritionist or a functional medicine practitioner (do you have any in Britain?) My overall health and energy level took 2 very good turns when I : found I was gluten sensistsive, and; found I was over-reacting to high histamine foods -- notably, cashews. I eat more greens now and my warfarin levels have been adjusted accordingly. Back in the day hematologists told us to eliminate high K foods. Nowadays, they are more likely to say that the warfarin doseage should be tailored to a healthy diet; not the other way round.

[Lure2 in reply to GinaD]

Yes of course your Warfarin level must be adjusted to the greens you eat. Less green more Warfarin - more greens less Warfarin. But I think you said earlier that even your therapeutic level of the INR was changed - your range was very low nowadays. Did I misunderstand? Interesting!

[Lure2 in reply to Lure2]

I said absolutely wrong !! It should be; less greens less Warfarin - more greens more Warfarin. It is difficlut to think about this.

[GinaD in reply to Lure2]

Actually, I take some reassurance that I am not the only one who gets opposites mixed up! I do that on a daily basis!

[witch2]

Could not take plaquenil allergic was on methertrexate for three years struggled in the last year. Came off it and went to a natrapath. Done three years with few flares and manage with herbal remedies for inflammation.

[kathyD64]

wow! Didn’t realise it was 4 years ago I wrote this! Suffice to say I have been injecting methotrexate for several years successfully! Oral just didn’t suit me but we did full circle!

I hope everyone is keep as well as can be x