The Future?

Hi

This is my first time of writing. I was diagnosed with RA about about a year ago and am on Metojet, hydroxychloroquine and folic acid.The first three months before the medication was a nightmare as I am sure it has been for most people.

I am not too bad now but I used to be very active, able to do lots of different crafts, walking good distances and gardening. Now I am very frustrated by how restricted I am despite reducing the time of each thing I do and mixing them so I don't repeat one movement too much. If I do very little I am sort of ok.

I recognize that everyone is different but does anyone with the right medication ever get back to or near their pre- RA activity level?

I am still hoping.

Thanks

10 Replies

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  • I lead a perfectly normal life as am in remission. I birdwatch, walk miles and dance. It just takes a bit of time really. Its true not all are so lucky but stay positive and be carefull but there is no reason why your RA journey should be any different.

  • Your post is encouraging, as my son has just been diagnosed at 27 with AS, so thanks.

  • So sad at such a young age, but treatments are improving every year so he has every chance of leading a long active and pain free life.

  • Thank you everyone who replied. It is nice to hear such a range of experiences.

    To medway-lady ; How long did it take to find the right meds for you and what are you on? I know everyone is very different but it would be nice to hear.

    Thanks

  • About six months and Leflodamide. First MTX then the LEF which had dreadful side effects for a few weeks then they went and life got back to normal. Lots of energy usually although the odd bit of fatigue but nowhere near as bad as it used to be. I'm in remission and grateful to be so.

  • Thanks

  • You seem to be coping with sensibly managing your activities and it will be great if you can keep that going and slowly work on regaining what you had as the meds start to work better. There are a very fortunate few who get to literally walk away from this disease and get away almost problem free but the majority fall somewhere in the categories of a "manageable range", i hope for you things get better than they are but try and concentrate on the excellent result you have had, i know any loss is difficult to accept but i assure you it could have gone far far worse.

    Blessings.

  • Hi I am on the same medication as you and I have found I can almost do everything I used to do, I have been on medication for 1 year I am very lucky as some people do not get to where I am you just have to tske things a bit slower and listen to your body it will tell you when you have done to much, I wish I could bend down to do things a lot better but I can cope with that I only hope it lasts without pain just look forward x

  • Hi, and welcome.

    One of the things I've learnt about this disease is that it's unique to you: "Your auto-immune system has created this disease - just for you!" There are quite a few options for sufferers and you'll probably have noticed in the forum some respond very well to treatments and others don't, to the same treatment.

    As above, Tillie20 has good results on the same treatment while I did not benefit at all when I was on the same protocol. I was very hopeful I would have some relief but to no avail - for me. Leflunomide is also now an 'also ran... '

    I remain hopeful of a successful intervention for my deteriorating state. Flares used to last 3 - 4 days but I'm finishing one that has gone on for two weeks. My GP is great and suggesting biologicals as the next step, which I am in agreement with - consultant needs to be convinced and I'm not sure my DAS score is high enough.

    I hope *you* will get benefit from MTX - I really do.

    Additionally, consider diet changes as they have helped many here. While there are evangelically driven (VERY enthusiastic) diets available you'll need to find one that works for you. Removing processed foods and a marked reduction of sugar, along with removing high gluten bread products has helped me to an extent.

    Keep going, there will be a combination of drugs which will work for you!

  • Hi Meadow-mogs - We actually have talked about that on here several times. It seems that the answer to that is as individual as the people that are on here. I also think that some of the recovery is contingent on other factors, like whether it is RA, or RA and Psorasis, or Sjogrens, that are all being dealt with. All of those will make it a lot more difficult to get to the pre-RA levels...

    And hope, my friend, is one of the most useful emotions in the world..

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