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meds, bones, and pains

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dinah2
dinah2

Greetings all

I was diagnosed with GCA at the age of 62, like my mother was. Unlike her I was very lucky and did not develop PMR as well, and doctors had learnt not to overdo the steroids quite so much. I was offered alendronic acid to counteract the steroid bone thinning but decided not after checking it out further - inspired by noticing a pile of PR material about it on the doctor's desk. After 3 years on the steroids my muscles and tendons were all weakened and I had frequent issues with my knees; I also developed cataracts in both eyes; I don't know how my bone density is as decided not to have another DEXA scan.

Until about a year ago I was on a very low dose of prednisolone and having continuing occasional jaw, temple, and scalp unpleasantness. Because my erithrocyte levels were low I was discharged from the Rheumatoid dept and came off the steroids despite these continuing slight symptoms and have only had two clear relapses since, both minor but definite - including a spell of zero energy, loss of appetite and malaise. On both those occasions I found that taking just one 5mg steroid tab for two days was completely effective.

I do sometimes have minor symptoms/indications of the GCA if I forget to take my daily self-prescribed dose of Uncaria Tomentosa, also known as Cat's Claw. When I forget to take it I am reminded, usually by temple pain which goes within half an hour of taking the capsules. In case anyone here thinks this is crazy, they should check this drug out on medline - there is a growing body of research on it in many areas and it has an extrermely positive profile, notably but not solely as an anti-inflammatory, with minimal adverse effects. No reason to think it actually strengthens bones, but at least it doesn't weaken them (the reason peope with PMA and GCA tend to be prescribed alendronic acid is to counteract that notable steroid effect).So, I just thought this account might be of interest to people here - it would be wonderful to see some serious research with Cat's Claw in this specific area but I don't know how to influence that except by telling people here. All suggestions welcome.

0 likes, 4 replies

4 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hi Dinah

    It is important for people to be aware that taking Cat's Claw can decrease the effect of medications such as Prednisolone that suppress the immune system.

    All supplements and over-the-counter medications should be checked out for compatibility with a pharmacist before taking alongside Prednisolone.

    Where GCA is a threat and especially as you say you are suffering from recurring temple pain, then the underlying inflammation causing the symptoms needs to be controlled in order to protect your eyesight, and the only way at present is with steroids.

  • dinah2
    dinah2

    Posted

    Thank you Mrs O, you make some good points. But I should point out that: when you say "the only way [to protect my eyesight] at present is with steroids" what you mean is: "the only *known* way" - why I am posting this in a public forum is because I think research into this alternative may be merited and I would like to draw attention to that fact; in practice, in my case, it is unmistakeable that my range of occasional minor symptoms is controlled effectively by the Cat's Claw; because I still have access to prednisolone I can affirm it was effective in low doses along with the Cat's Claw on the two occasions the GCA became more threatening; I was having the continuing mild symptoms of GCA while still on regular prednisolone.

    As it happens, the cataract in my left eye has led to a very bad series of events leaving me with much less useful vision in that eye than I used to have; the cataract in my right eye has stopped developing since I came off the steroids. All the eye people I've seen, at Moorfields and elsewhere, take it for granted that my early developing cataracts are related to the high cumulative steroid dose. So it is quite ironic to have probably caused the torrid sequence via the intention of protecting my eyesight.

    My personal choice is to manage the risks in a way that reduces my bodily distress over all - general muscle weakness and painful long lasting dislocations were features for me while on the steroids. I have been discharged from the Rheumatology department of my local hospital and they are aware that I am regularly taking Uncaria now and not prednisone. I don't recommend anyone to try this without medical consultation; but it works for me, and my body feels like my own again.

    If the discussion here improves the chances of research into this promising anti-inflammatory for GCA (and possibly PMR) that would make me very happy.

  • hazelmae
    hazelmae

    Posted

    actually, i have never heard of Cat's Claw but i do agree with what MrsO said that "All supplements and over-the-counter medications should be checked out for compatibility with a pharmacist before taking alongside Prednisolone."

    - i wish that you are well now and for the next coming days...

    Hazel

  • Nefret
    Nefret

    Posted

    I tried Cat's Claw in the early days with no noticeable benefit. Along with Devil's Claw, I think they are the most well-known of the alternative supplements and some may be desperate enough to try them. If they work for you and there are no contraindications, I can see no reason not to use them.

    There is also Celery Seed - I haven't tried it, but have seen it mentioned in the rheumatism/arthritis literature.

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