Posted Fri 12 Jun 2020 11.23am by Paul M
Just want to say its obvious there's a great community on here, all of whom are willing to support each other with psoriasis and PsA. Reading other people's comments its clear that its different for everyone and some struggle more than others, so I hope everyone is coping and managing the conditions as well as you can.
I'm 40 and I have just been diagnosed - I guess I'm lucky that its not effected me too much so far - had psoriasis for around 10 years, mainly on scalp and a bit on hands and then had a pain in one finger joint for a while and then it swelled over the last few months. No other issues really - do get a bit of slight back stiffness and have had a dodgy hip but think thats more related to an old football injury and just getting older! I am still pretty active and do quite a bit of running with no major issues.
My rheumatologist wants me to go on methotrexate, which I know is usually the first treatment option and I understand that PsA may progress to other joints and get worse overall, but I'm a bit concerned about risking having side effects when I've only got one joint thats swollen (it doesn't caused me too many issues at the moment). So I'm just wondering if anyone else has tried to manage PsA with out medication - e.g. using herbal treatments, supplements, exercises, ice packs (& anything else). It might be that you tried it and it was difficult and you ended up on medication anyway. I appreciate that we're all different and some things (including medication) will work for some and not for others. It would just be good to see what other experiences people have had. Some days I think maybe I should just take the medication and then others I think maybe I should try and manage it in other ways first.
Any info you can provide would be great.
Thanks and take care everyone
Posted Fri 12 Jun 2020 1.05pm by Mac
First of Paul if you can do with out meds, then all the better ( that's my opinion). I would have thought they would have tried other meds before going straight too MTX.
I'm probably not the best too answer your questions on the herbal and supplements, I have tried them and had no joy with either. Though my PsA effects my feet, knee's, back, ribs, hands, shoulder's and eldows :(. So probably would be expecting a lot from the herbal to do any good, maybe some would say a miracle ;). Give them a whirl you never know.
Exercise, ice packs and even heat through bean bags heated in the micro wave give me a lot of relief, exercise being one of the best, hard too do at times but worth it in my opinion.
In all honesty Paul if I could keep of drugs I would, and if it was only affecting one finger would definitely be trying to soldier on with out meds.
I was on 20mg MTX for year's then it started going south for me at the start of last year. So I think you only get so long on that type of drug, best to save it for when you really need it, would be my chain of thought.
Good luck Paul for what ever route you choose.
Posted Fri 12 Jun 2020 9.10pm by Paul M
Thanks Mac, it's good to get someone else's thoughts. I suppose I am thinking myself that it's a bit extreme going on a drug such as this for one finger joint!
I definitely agree with everything you say, I'm sure if I was struggling a lot I would do anything I could to sort it and I'm lucky that it's not a major issue at the moment
I hope you are coping with yours okay and thanks again for replying.
Posted Sun 28 Jun 2020 10.49pm by LadyJay
I have been on MTX for two years and was also put on Amgevita last August, having suffered many side effects from massive hair loss to nausea all day to crying all the time, with bouts of severe fatigue,
I have consulted with my specialist about coming off both drugs, as I feel ‘clogged in mind and body’, so for the next month I’m stopping my medication with approval. What astounds me is that all we get offered is more drugs, my hands hurt all the time, and over the last four months I do not feel any improvement taking Amgevita, my condition is Chronic but wonder if I give my body a chance it might work better without them.
My joints hurt a lot but not all the time, and I am fed up moaning about being in pain, I would love it if there was an alternative route-holistic / natural / herbal anything but this.........
I will write if I see any advantage coming off my drugs, is four weeks long enough? Only time will tell.
Hope you are keeping as well as possible.
Posted Mon 29 Jun 2020 5.20pm by Mac
Hi Lady Jay.
Medication can hit some people harder than others, and if it's causing that much trouble you're right too say something to your rheumatologist. The hard thing will be finding one that agrees with you and helps at the same time, plus you have too go through that waiting process for to see if it's working. it's not a short process sadly.
MTX was working great for me, till it started to mess with my liver. It's not a miracle cure, but does keep them flare up's manageable. I'm now back on 10mg MTX along with my bio injection from the middle of January this year. It's a long road.
Was the MTX agreeing with you till you started the amgevita? might have been better just stopping the amgevita first and see how you got on.
Posted Tue 30 Jun 2020 9.43pm by LadyJay
Thank you for your reply. I never thought to stop Amgevita first, that would have made sense but I did write directly to my consultant and it’s what she advised. What was also suggested is that I might have secondary Fibromyalgia which would explain a lot of other symptoms.
I was taking 20mg MTX weekly
40mg Amgevita fortnightly
This is my first week not taking either!!
Yes the MTX was working but I don’t feel the benefit anymore, so now I won’t know which is best or if I can manage without them altogether. I’m keeping a daily account of how I feel, the only thing so far is my skin feels like spiders are inside but it’s only occasionally x
Will update at the end of the week.
Posted Wed 1 Jul 2020 2.18pm by Mac
I too was on 20mg of MTX, till it went south for me at the start of December last year. There was times i too thought it did no good, boy was wrong when i had to come off it :(.
It sounded from your first post that you where coping with MTX, and things started to go wrong when you started amgevita. That's why i was a bit surprised when i read you stopped both. I'm no doctor though.
I know what you mean about the irritable skin, i can remember at the very start they gave me Sulfasalazine, geez it nearly sent me up the wall, not a nice feeling at all.
Good luck Jay hope all goes well.