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Posted , 5 users are following.

titania
titania

Thank you for your answers. Now I know I can count on your friendship and understanding. However I still wonder what is waiting ahead. I noticed than many of you are concerned about prednisone (this is the name in Canada) and its side effects. With 3 pills a day (5 m each) I have no more pain, but my legs are still stiff and walking is difficult and slow. How do you manage? Is a cane necessary? Or a walker? I'd like to know more about your experience. Did any of you recover completely? Is anybody assisting you or is it possible to manage with no help? And what about osteoporosis?

I realize that these are too many questions (sorry!) and that everybody has his/her own story. Anyway I am here, ready and willing to learn as much as possible.

0 likes, 5 replies

5 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello again Titania

    Yes we are concerned about having to take Prednisolone and would not take it from choice but we don't have a choice as the only alternative for many of us is life in a wheelchair suffering horrendous pain and for those with GCA the very real risk of losing our eyesight. So although there are over 80 listed side effects I would prefer to take my chance with these than face either of these \"alternatives\". Very few people suffer from serious side effects and the common ones most of us get include the moon shaped face and weight gain, both of which disappear as soon as we reach the lower doses, as does the risk of osteoporosis.

    The leg stiffness is a problem for most sufferers especially in the early days and this does, of course, make walking difficult. If the balance is affected then a walking stick would help to ensure you stay upright!

    Yes, there are many people who recover completely, with both PMR and GCA going into remission, but it is a slow process taking 18 months to 3 years, occasionally longer, and can test our patience at times. But as the steroids begin to control the inflammation you will find it possible to lead an almost normal life as the bad days become few and far between. On those bad days, you need to just take it easy; on the good days much as it is tempting to springclean the house :wink: , it is recommended not to overdo things or PMR will bite back! Learning to pace ourselves is one of the hardest lessons and I hope you will continue down a smooth path to recovery.

    MrsO

  • EileenH
    EileenH

    Posted

    Titania - MrsO has said most of it. Be patient - it is NOT a miracle recovery whatever anydoctor may have said. The worst goes quite quickly at 15 to 20 mg/day but some residual stiffness and pain will be there for a while. In a year you will look back and realise how far you have come and find it difficult to remember how bad it was. If you are lucky it will be quicker. Gentle exercise and warmth will help you get moving in the morning - and as the day goes on you feel better as long as you don't overdo it. The walking will improve too - balance is a problem because of the muscle problems and then some people find their legs go AWOL when they are on higher doses of steroids. :roll:

    Just think as positively as you can :lol:

    Eileen

  • mrs_k
    mrs_k

    Posted

    Titania

    There is a website, www.pmr-gca-northeast.org.uk.

    On that website, there are people stories, tips on health, newsletters, 90% written by people with PMR and/or GCA.

    The medical information is all checked and vetted by medical professionals.

    It is well worth perusing.

    You will also find links to other places as well as this one. But this one is the best.

    We all now how you feel, we all embarked on this mysterious journey, which none of us wanted to take - but knowledge is power and the one thing to remember is listen to your body, you know yourself better than anyone, learn to go with the flow. You cannot win against it, it bite backs.

    Oh and also learn how to say 'NO'.

  • Gabriella
    Gabriella

    Posted

    Hi Titania

    I have had PMR for 8 months now, and like you live on my own. Yes you can manage, in fact sometimes it is better, you only have yourself to please. You will be feeling down having just lost your husband and this illness isnt helping, but I live a pretty normal life, and PMR hasn't stopped me doing anything that I want to do, and it is a useful excuse for not doing something that you didnt enjoy even when well.

    Gabriella

  • Nefret
    Nefret

    Posted

    Titania

    I am so sorry to hear of your current distressing situation. You wouldn't be normal if you didn't feel down - I think it would be odd if you[i:9930d8a91a] didn't[/i:9930d8a91a]. I hope you are able to move on soon.

    I can offer this - I am one of those whose legs do not like steroids. I am currently on 13.5mg and having to use a stick to help me out. Without it I tend to weave about all over the place and I am not at all steady on my feet. The stick does also give some warning to others that I have problems - it's also useful for fending off small children! It gives me the confidence to walk further and also a degree of independence, so I wouldn't be without it right now.

    Take it all day-by-day, all things do pass.

    Nefret

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