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TA and PMR

Posted , 3 users are following.

Guest
Guest

I have had TA for about seven years and had just gotten off of Prednisone a couple of months ago and then PMR set in. My Rheumatologist started me on a low dose of Prednisone, but then things went beserk. I had several bad falls and then couldn't walk, stand, or get out of bed without help. My doctor upped the med. to 40 mg, and things calmed down. Now I am on 20 mg. I am 73 and it has not been a fun time. I have had many side effects from the Prednisone and worry about being back on it, but I may have to be on it the rest of my life. I hope I'm not discouraging anyone, for my doctor really thinks that I am a special case - a hard nut to crack. Here is one for the medical books. My husband also developed TA and later PMR. However his case was not as bad and he soon recovered. Thank goodness. It was encouraging for me to hear that other people had the same symptoms. If you just have PMR, alert your doctor about any headache because you do not want to get TA. It is much more serious and can cause blindness.

0 likes, 5 replies

5 Replies

  • Nefret
    Nefret

    Posted

    I am so sorry, you have had a hard time. This is such a weird illness, the way it comes and goes and there just isn't a simple solution, is there? I've had it 8 years - I'm now 64 and more or less resigned to having to deal with it for ever. I've had so many setbacks and false recoveries that I just try to take it one day at a time, to rest when I feel I need to and not to overdo it on my \"better\" days (which I find is easier said than done, if I feel better I want to get everything that is worrying me sorted out!) Do take it easy, perhaps the better weather will make a difference, it does make me feel more cheerful. It's amazing that your husband managed to recover from both conditions! All my best wishes to you both.
  • Guest
    Guest

    Posted

    MrsB - You do have my sympathy for suffering from both PMR and GCA......as a like sufferer I know how much more serious GCA is and your advice to people who may suffer a sudden headache is very helpful indeed and I second it.

    Yes that does seem like one for the record books with both you and your husband suffering from PMR AND GCA - I have heard of two sisters living together who both suffered from PMR - they apparently cured themselves with Evening Oil of Primrose and didn't take steroids! I am on the point of being introduced to one of them and hopefully will find out more.

    After 8 years it must be so difficult for you to remain positive as I'm in my third year and know each time I have to increase the dose back up I lose that positivity for a few days until I snap out of it, and it's amazing but we do, don't we.

    It's good that at least your husband has recovered from both conditions and that must have been some relief for you, and it also means there is hope for all of us. From what has been mentioned on this site before, it would appear that men recover more quickly than women for some reason - something in their water!!!

    Do hope your husband stays well and that you will be able to celebrate your recovery with him one day as well. Good luck.

    MrsO

  • Shastajak
    Shastajak

    Posted

    [quote:2fecd1bf0f=\"MrsO \"] I have heard of two sisters living together who both suffered from PMR - they apparently cured themselves with Evening Oil of Primrose and didn't take steroids! I am on the point of being introduced to one of them and hopefully will find out more.

    [/quote:2fecd1bf0f]

    I'd be very interested to know how they did that as I've been takin Evening Primrose Oil for about 6 years. I can vouch for it helping with painful breasts during menopause.

    Jak

  • Guest
    Guest

    Posted

    Jak - sorry to hear that Evening Primrose Oil obviously hasn't helped with your PMR as it seemed to do with the two sisters I referred to. Perhaps it's just a fluke or what works for one doesn't necessarily work for another, or perhaps their's wasn't even PMR but a misdiagnosis. When I find out more, I will pass it on. I know of someone who once contributed to this forum who was trying Rosehips after recommendation but we haven't heard back of any success from that trial either, but we have to keep on being open to any suggestions - you never know someone out there amongst us might just find the holy grail one day!

    By the way, how did your blood tests go recently - did you have to increase back up as high as you feared? Do hope you are feeling more comfortable anyway.

    MrsO

  • Pammy
    Pammy

    Posted

    Mrs O

    I was the person trialing rosehip powder - sorry I didn't report back - I only took it for 5 days and it upset my stomach. I haven't heard of anyone with PMR having a positive result with it.

    I am one of PMR fighters and although I read all the comments on this site I don't often contribute these days. I'm running a PMR-GCA UK support group in the N.E. ( area 1) covering from Bishop Auckland to Whitby (Area 2) covers Tyne and Wear, N . Durham and Northumberland Anyone wishing to join us can email xxxxxxxxxxxxx

    Our new charity PMR-GCA UK is now registered and aleady has acquired £55,000 from a Trust for set fees and research - what a wonderful start - thanks to all the hard work and committment of the people involved.

    There is no rhyme or reason to this illness - today I've had the lowest ESR and CRP readings for 3 years (ESR 9 and CRP 8) which should mean I'm \"normal\" and yet I'm very, very stiff and fatigued!

    Go with the flow but don't give in to it.

    You are not alone

    Pam

    [size=9:c48fb07609][color=orange:c48fb07609](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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