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Psoriatic arthritis tips

Posted , 4 users are following.

maltesefalcon
maltesefalcon

Hi all, I am a 27 year old female and have been diagnosed with Psoriasis at the age of 16 and psoriatic arthritis at the age of 25. I have most of my shins, knees and elbows covered and then the odd small patch here and there. To be honest I can cope with the psoriasis but during the last 3 months the arthritis has gone to a new level and I have multiple joints swolen. The worse part is that my ankles and the bottom of my feet are badly swolen making walking very painful. When I visited my rheumatologist he immediately instructed that I start taking methotrexate, otherwise I may end up in a wheelchair. After reading about the drug and basically if you stop it the disease comes back with a vengeance, I am very skeptical. Over the past 2 weeks I have started taking a proper diet therefore removing all gluten, dairy, eggs, nightshades, tomatoes, preservatives (I haven't drunk alcohol in years). As soon as I wake up I squeeze one whole lemon with roughly a litre of water. Then I eat 50g of organic gluten-free oats with some almond milk. Then I take a number of supplements which include; milk thistle, dandelion, lyprinol and tumeric. Next week I registered for a hydo-therapy class, hopefully to relieve the pain and of course start going regularly. What are your views on the above? Shall I start taking the methotrexate? Are the suppliments listed above sufficient? Your personal opnions are much appreciated because I am in terrible pain. Thanks in advance!!!

0 likes, 5 replies

5 Replies

  • gillian_25383
    gillian_25383 maltesefalcon

    Posted

    Only you can decide on methotrexate after counselling (in my case done by rheumatology nurse).Do not expect instant relief of pain as it can take up to 4months to take effect.I have just gone up to the maximum oral dose and touch wood at last feeling a lot better.They will do blood tests on a regular basis the whole time you are on it (at present mine are every 2weeks at GPs )so they will know if your inflammation is going down.With regard to your supplements I would recommend you see a professional or ask more knowledgeable people on this site e.g. Eileen or Ptolomey.Good luck
  • EileenH
    EileenH maltesefalcon

    Posted

    If you have a serious arthrtis you will not avoid joint damage by taking supplements, that is what will have you in a wheelchair - and the diet you describe is more likely to result in malnutrition than managing your PS.

    The reason the disease "comes back" if you stop the drug that "manages it" is because the disease is an autoimmune one and the drugs only damp down the activity of that process, there are not yet any drugs that will cure autoimmune disorders - where the immune system does not recognise your body as "self" so attacks the tissues as if they were invading viruses or bacteria. The methotrexate is to calm down the activity of the immune system and prevent the damage happening. The sooner you start it the less damage will be done to the joint linings. If mtx doesn't work they will try another - until they find something that does. At some point any of the drugs may stop being effective and then you progress to the next on the list. 

    You rarely see people these days with severely damaged joints from autoimmune arthritises because there are drugs that can be used to reduce the damage. Note I say reduce, not repair. once the joint is damaged beyond a certain stage the only option is a joint replacement - for one joint after another, you'd be surprised what joints can be replaced.

    Go and google and read  Lene Andersen's blog, The Seated View. She developed RA as a child and is now dependent on a wheelchair to do anything, requiring constant assistance to live - because when she was young there were no such drugs. I think if she was faced with your question she'd tell you to try mtx - you could probably ask her.

    However - I have, by the way, pointed out to the moderator this isn't the right place for your question. Almost no-one on this forum is faced with a decision about mtx because the vasculitis we have that gives rise to an arthritis doesn't destroy joints - the only thing that manages it is long term prednisolone, and believe me, I'd have a lot more sympathy if you were trying supplements to avoid it. They don't work for us either. But mtx probably has fewer downsides than pred so it would be used in preference if it worked. It doesn't in PMR

    The bottom line is that the sooner you start taking mtx, the sooner you will get some pain relief. Supplements and leaving whole food groups out won't do it. I'm sorry to sound hard - but I would be lying if I said carry on doing that and you will be fine because the chances are vanishingly small. To be honest - if you were diagnosed with PS a year ago I'm very surprised you weren't put on mtx or something similar then. Early treatment is essential to give the best long term result and you are quite a way down the line now.

    • maltesefalcon
      maltesefalcon EileenH

      Posted

      Thanks for the clarification. So my next question is...what can I do in order to keep the mtx dosage to a minimum? and apart from the folic acid, are there any other methods to keep the common side effects (hair loss, nausea, fatigue) at bay? Thanks again. 
    • EileenH
      EileenH maltesefalcon

      Posted

      I really don't know much about it - as I've already explained, the group you first posted in doesn't commonly use methotrexate, it simply doesn't work for the illness we have. I just know the theory of the pharmacology.

      Most of those side-effects are for the high doses used in chemotherapy, you will be on a much much lower dose for PSA anyway. I know "mtx flu" or "hangover" sometimes happens for people with RA and some people take their dose on Friday night so they are over it by Monday, some people have it as an injection which is said to avoid the gastric effects - but it DOESN'T happen to everyone. Nor does hair loss. The fatigue is probably as much to do with the autoimmune disease you have and the drugs, whatever they are, don't affect the autoimmune part, they are managing the symptoms as best as is possible to give you a better quality of life - surely anything is better than what you have at present?

      If you want to know more from people who take it without problems - and there are very many of them - you could also post on the rheumatoid arthritis forum which probably has more members than this one. They are a lovely group and very helpful.

      But you are assuming methotrexate will definitely make YOU ill - until you try it for yourself you cannot know that. If the side effects turn out to be worse than the illness your doctors will look to find something else - but you have to start somewhere. Juvenile forms of arthritis can't be left untreated - well, they can but you will almost certainly end up in awful pain AND in a wheelchair - but which drug is best for you has to be worked out. That means you have to take a leap of faith and start on one - and then you can work from there.

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