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.
Posted Sun 5 Jul 2020 11.46pm by LadyJay
A quick update- on Saturday morning I woke with really painful hands and my left shoulder was tender too, felt quite low so took it easy and paced my day, this morning felt better with mild general discomfort but not too bad.
More tired than normal but not able to settle for sleep and it’s 11.42pm Sunday. Have a wicked sore throat that has just started 🥺
It’s only two weeks so far without medication!
More soon, LadyJay
Posted Thu 30 Jul 2020 9.05pm by LadyJay
Well it’s been a rough time trying to be off my medication, so I am now back on Methotrexate with all the side effect I had before hope they settle quickly.
Not on Amgevita yet as I am waiting for new supply, in truth wish I hadn’t stopped, think there was one week I felt great but it didn’t last......
The psoriasis in my scalp flared up quite bad, last few days have been very emotional and very fatigued.
Most likely I won’t feel better for about a month or so, my consultant will see me in three months time or it might be via videoconference not sure how that will work.
At least I know what to expect,
I have also started eating blueberries and a much healthier diet if anyone has any advice along those lines I would be very grateful.
Hope you are well
Posted Fri 31 Jul 2020 9.01pm by Mac
Sorry it didn't work for you being off the tablets, at least you know they where doing good. I never had any luck any time i had too stop them.
Posted Fri 7 Aug 2020 6.28pm by Loobizaz
I was diagnosed with PsA back in 2006 and I’ve been dodging meds since then. I had an initial bad flare which I am certain was triggered by a live flu jab..... but since then I’ve only had intermittent mild flares which I haven’t even taken painkillers for.
I removed wheat, tomatoes and oranges from my diet along with other nightshade foods except white potato. The tomatoes made a huge difference - initially if I accidentally had any after I’d cut them out it would cause pains from my elbows to my fingers for about 3 days.... now I get a sinus led allergy reaction!
I hardly have any dairy and I don’t eat sweets/cakes or pretty much anything with processed sugar.
This has worked very well for me up until the back end of last year. I had a flu virus at the end of September which triggered a flare of tendinitis, enthesitis and some bursitis, and I’m now facing the prospect of having to try MTX as I can’t seem to go a day without pain in at least 3 joints.
I’m a holistic therapist and have sensitivities to a number of drugs, so the thought of having to take MTX makes me pale! I always try the holistic/alternative options if I can.
Maybe try an exclusion diet to see if it helps you - but a lot of people in groups have told me I’m stupid for not taking drugs earlier to prevent damage? I guess we are all different!
Good luck with whatever you try - I hope you find something that helps.
Posted Wed 19 Aug 2020 10.29pm by LondonWest
Had P on and off for many years 🤗
I agree with Mac if you can avoid the oral medications and injections then that’s better. I know people who have gone down that route and they always seem to be taking something new. P isn’t going anywhere and will come and go with different intensity. As for the diet thing would people try avoiding certain foods for other diseases like cancer. Their P improves because they have cut out certain foods is a coincidence I would suggest. I first got P at age 10 after having chicken pox I’m 55 now and realise it’s going nowhere. Its down to inherited dodgy genes not eating Tomatoes or anything else for that matter. Keeping your weight down and regular exercise does help apart from that just learn to live with it and accept it. We are all chasing the magic bullet that doesn’t exist. Yes there’s lots of fancy treatments on offer that will curtail it for a while but it always seems to come back.
Posted Thu 20 Aug 2020 7.48am by Loobizaz
I would like to suggest that food can have a huge affect on the body - in other conditions as well as PsA. The body is an amazing mass of cells that are affected by everything that we put into or onto our body. Many people with autoimmune conditions also have coeliac disease where gluten containing foods have a serious detrimental effect on their whole system.
If our bodies are sensitive to a food in its natural state, or to the chemicals used to process a food, then quite often the body reacts by creating rashes on the skin or triggering the immune system into action. If you can accept that a drug could exacerbate P or PsA then is it such a stretch to accept that another substance - food or drink for example, could also do the same in a person who is sensitive to that substance?
I have a number of food sensitivities which trigger allergy reactions (thankfully not anaphylaxis) this reaction by my immune system then triggers my PsA - with PsA being caused by an overactive immune response..... therefore just like any virus I get, certain foods that I’m allergic to can also trigger PsA symptoms.
I believe I have intestinal permeability following an infection of campylobacter and salmonella at the same time back in 2006, which has led to this issue - but in my opinion and experience, you cannot rule out food as a trigger for symptoms.
A number of people have also benefited from cutting out foods which cause acidity or inflammation in the body.
Perhaps you don’t have any adverse reactions to food, therefore your experience is different but that doesn’t mean that trying food elimination won’t help someone else who doesn’t realise that they are affected by food allergies/sensitivities.
I personally would adjust my diet if I had cancer and do anything else I could holistically to give my body the healthiest and best chance of recovery. Red meat for example, is one food that females are told to cut out if they get hormone triggered cancers.
It might not be a magic bullet, but in my experience it can make the world of difference - and yes maybe something else will trigger a flare somewhere along the line and even the dietary measures won’t get it under control... but I’m proof that dietary changes can work for at least 14 years in keeping symptoms very much at bay and definitely not needing even paracetamol.
Posted Wed 26 Aug 2020 11.35pm by LondonWest
Had P on and off for many years 🤗
Hi Loobizaz I’ve tried all the fad diets and cutting certain foods out, you name it I've tried it. I’m happy it worked for you but I’m giving my own personal opinions on this issue. For me P is like a switch being turned on within my body and no matter what i do or eat it isn’t going to be turned off. We all search the latest treatments and creams looking for something magic. Apart from people with allergies to certain foods i feel the Food route is just shooting in the dark. Even on your food route you still admit that that you still have P but its improved, well i think that could of happened anyway no matter what you ate. If the food route was so important And proven then dermatologists would advise people with P a certain diet or a list of foods to avoid. I’ve discussed p with many dermatologists including diet and I’ve never received that advice
Posted Mon 7 Sep 2020 1.43pm by Rkh
Hi Paul - I've been on methotrexate since December 2018 and have had no side effects whatsoever. I appreciate this is not the same for everyone unfortunately. When I was first prescribed this medication I googled it and was really frightened about taking it. I take 15mg every week and one folic acid tablet 24 hours later. It has been a godsend. My skin, which had become very bad and was really getting me down, completely cleared up and I have no joint pain.
Posted Tue 8 Sep 2020 10.04am by Aussieborn
Hi. I was diagnosed with PA and oesteo arthritis in Dec 2018, though I believe I've had it for years before. I was born with Psoriasis. I'm really struggling with the lack of support from Rheumatology and just feel very brushed off by them. I haven't seen anyone from Rheumatology since March 2019 as they keep cancelling my appointments. After a phone call to the specialist nurse telling them how much this is affecting my daily life, they finally agreed an appointment, in November. I asked for biologic treatment but was told no. Theyre going to do a scan but not what type. I'm on 25mg methotrexate since Dec 2018 but this is not managing my symptoms as I'm in pain every day, can't sleep properly as I get a lot of pain and discomfort in my spine and ribs so can't stay in one position. I get pain in all of my joints feel exhausted most of the time but am working which is a struggle sometimes. I've tried cutting out tomatoes but that didn't seem to make any difference. Just feeling very down at the moment, feel guilty for being so tired and just feel at times that family think I'm making it up.
Posted Sat 12 Sep 2020 8.39am by Mac
My consultant told me that they where only seeing priority cases, when I commented on being the only one in the rheumatology department. I had too wait in the car, then they phoned me when the person who was in before me had left and they have cleaned up.
So they aren't getting through too many people with this bloody corvid still on the go. I'd imagine by the sounds of it your not in the priority group.
Is it an MRI scan your going for, if so bring a bottle of water with you and take drink just before getting in the scanner. It takes 40 mins for the scan of your spine and hips if memory serves, believe me with the air they blow in around you it makes your mouth dry. I too have PsA and osteoarthritis at the top and bottom of my back. If it shows on your spine with the scan you'll be straight on too Bio.
I'd love to be one of these people that change their diet and arthritis disappears. I have chased that magic bullet long enough, and have pestered my consultant with just about all I could think of, at the end of the day it is what it is, just gotta get on with it.
Hope this answer's some of your questions.
Good luck Aussie.
Posted Sun 13 Sep 2020 1.11am by chrism
hi would like to share my experience with psoriasis
the condition came on me when I was in my 40s compared to others mine was only located in a few places
(both knee caps/ elbow/ behind ear and inner ear/ patches on my back. If not treated with creams it would result in very dry scales almost powder like if scratched .I have tried most cream from the doctor but they just seemed to
control. it, the cream I am on is Dovobet
My psoriasis is now clearing up without the use of Dovobet my wife ask me what have you changed , I said the only thing that I have changed was that I started to put just under a quarter teaspoon of cinnamon and ginger in my coffee , I have done this for around 4 month and its only within these 4 months my psoriasis started to clear up to the point that my skin is now smooth you can just see a light shadow of where it was now, whether this is due to ginger and cinnamon in my coffee I don't know but that's all I have changed in my routine. also note that the cinnamon was the Ceylon which is said to be true cinnamon, both are the powder type in jars from the herb and spices section in a supermarket it could be worth a try for others . Chris