Hoping For Better Days & Looking for Sympathy

OK. This is a rant, and won't help anybody, except maybe me. I'm back to trying, trying, trying. I get up at 1:00 AM.  With water I take something to coat my stomach. (My esophagus is a mess. They routinely stretch it. So the gastro guy is yet another doctor.) At 2:00 AM I take 8 mg. of Pred. I should and sometimes do eat before this and take a sugar reading. Then maybe I sleep. I'm up at some time in the morning. The Pred by then has raised my sugar. I eat, & exercise on the treadmill for about 35 minutes. Hopefully this takes care of high sugar for the day. When the Pred begins to wear off my blood pressure rises. I think that it's the antibodies gearing up (as the Pred begins to wear off) and attacking the linings of the arteries inflaming them. So I try to eat diuretic food like parsley and celery. (The docs prescribe diuretics for high BP. If this doesn't work then it's another doctor.) I try for Yoga at 5:00 PM or 6:00 PM mostly by myself, so it's not very strenuous. This seems to keep the sugar lower in general and makes the first morning sugar reading normal (at least if I don't take Pred before sunup.) Maybe I will restart doing weights at the gym if I have nothing else to do and am not in bed!!!!!! My eyes won't let me drive any more. (So I have to walk to the gym.) Maybe I can patch one eye and try to drive. (I bought a patch, but it has not yet been delivered.) It seems that my eye problem is a 6th cranial nerve palsey, cross eyed-ness (diploma), and the eye turning in ("o" something). All three do something slightly different to make my vision wacky, but I think that it's all in one eye. The term is that I have trouble "navigating." So sometimes I walk where I want to go...... equaling another attempt at getting well. But more often I just can't manage. Then wine, yes red wine. Something pleasant. Vasodilator, and corresponds to the Pred's stopping raising my sugar after some hours after taking dose. Liver digests wine and stops putting glycogen (sugar) in my system during that digestion. By the time that the liver is done, the Pred has stopped raising my sugar. So the actual wine doesn't raise it as it would for a regular old type II diabetic. Hope that my sleep before 1:00 AM is good for blood pressure. I know that some of us wake up blind because our pressure lowers at night and the oxygenated blood to the optic nerve is insufficient..... But as my once daily Pred dose abates my BP goes up. Since I take Pred at 2:00 AM I suspect that my pressure is not low when I'm sleeping before 1:00 AM. (Maybe that's not such a bad thing Re: Optic nerve.)   The Pred lowers the blood pressure. So maybe all is well between 1:00 AM and when the Pred raises the sugar. I'm at an all out war with this thing (GCA & sometimes PMR). If I every go into remission I'm trying to come out of this as other than a relatively immobile, old woman. It's lucky that I have my own business and I've been able to wind it down. I have time for nothing else than this personal war. And often I'm too tired and depressed to do all of this. I started recently instead of just tolerating the funk and constantly going to bed. Maybe I won't be able to keep it up. I know that I'm lucky that I'm not blind. But I'm sooooo frustrated. Got it in April 2013. Diagnosed in November 2013. Use PNMpro's reducing method, but now only when I'm pretty comfortable with the pain and tiredness at an existing dose. Otherwise even with the slow lowering of dosage, I flair. With the exercise, tiredness, sweats, etc., I never seem to be properly "dressed." Therefore, I'm never looking my best. I know that you all are in the same boat. There is no one other than you who understands. Thanks for listening.

21 Replies

  • If you have got to 8mg pred and that works - I wouldn't worry about reducing any further. Many experts think GCA people need a low dose for life - and 8mg is a physiological dose, about the same as your body would make anyway.

    Take out all the unnecessary worry - and ignore the rest xxxxxxxxxxxxx

  • Thank you PMRpro. And thank you for all of your work on here.

  • Wow ! And, I think I have it bad ! Diagnosed sixteen months ago, after almost two years of symptoms. I've had seven Flares...sending me to the hospital each time. ( I'm in the US ). With God's Grace, I have a husband who is very 'on board'. He studies this link each morning .....creating a spread sheet as he goes. Our doctors have made many mistakes. We've made a few. After two serious Flares....we have gone from one home ( Fl.) to another (SC ) where we can have more consistent care. My Rheumy here is more cooperative. After being on 60 mg after my recent Flares...have now dropped to 55mg. I felt symptoms again in just twelve hours. I'm quite certain they are only withdrawal symptoms....not another Flare. This is not a disease for 'Sissies' ! Each day, I look for a 'Silver lining'. I am not blind....but, could have been, had I not been made aware of this illness. Just in the nick of time. Some vision and hearing loss. I still drive.....my field of vision has been greatly affected. Hoping I can continue. After Flares, I've been totally exhausted but am starting to feel considerably better. Hoping it will continue. Hubby has figured out my schedule...hopefully GCA/PMR will cooperate. With a very slow taper I may be out of this nightmare in about three years. Funny !!! Initially, that would have seemed impossible....how could it last so long ? I didn't sign up for this !!! Now, I just want to be well. Someday !!

    Pity Parties are allowed ! Sometimes necessary !

    Asbeck....keep trying ! There are others here wishing you well.

    Keep in touch, Cj

  • Someone on another thread put up a link for a paper by Hayreh the other day - google Hayreh GCA 27 year study to get a link to the abstract at least.

    He's an ophthalmologist and they tend to be more aggressive and persistent in management of GCA - they see the patients who have lost vision more often - and he says they found it takes a median time of 4 years to get to the lowest dose that keeps the ESR/CRP stable. I'm not entirely convinced by his insistence that ESR/CRP is all that is needed because about 20% never have raised blood markers at all. He is also convinced it doesn't appear in younger patients and I definitely don't agree there. 

    However - I do approve thoroughly of his views on time scale. If rheumies didn't rush to reduce the dose then I'm sure a lot of people would have a lot less difficulty.

  • Hi PMRpro...Is the research online that states that "20% never have raised blood markers"? I haven't been able to find a figure cited on this. As you know, I'm in research mode, and would like to read this.

  • For PMR:



    For GCA


    and you will find the appropriate references numbered in the text and listed on the refs page at the end.

    You may need to register for Medscape, the other 2 are the abstracts - no doubt the full texts are behind paywalls, I didn't look.

    By the way, I searched "normal range ESR in polymyalgia rheumatica" and "normal range ESR in temporal arteritis". My search engine is very well trained - it offers that sort of thing as automatic by now...

  • Thanks PMRPro. 

    In trying to get a good diagnosis for the horrible headaches with vision problems, I was having in 2013 --- one issue I encountered was a normal Used rate, which has remained normal throughout this.

    First marker, aside the vision and headache was a high C Reactive Protein. 

    Hospital neurologist refused to biopsy -- said, I was "too young at age 59" and 'only' one marker.

    4 months later biopsy showed giant macrophages-- diagnosed as GCA. 

    Could have lost my vision. 

    Glad you are doing a study of "markers", including C-Reactive Protein and ESR.


  • Should be Sed rate., not Used

    Android decides its own spelling, etc. 

    smh eh

  • Too young at 59???? 

    Have you seen the links to Hayreh's work I've put up today? He'd have got it I'd think.

  • Head of a neurology clinic, major hospital said he believed this was a "mutated" migraine.

    Did not think he was correct.

    Not sure, if my earlier reply posted.

    I had similar symptoms as my mother had in 2002, when she was diagnosed with GCA.

    Neuro surgeon- same hospital saw the high C Reactive Protein. He asked if he could do a biopsy. I agreed.

    They found it. 

    May not be a high incidence in NYC.  Head of clinic was a man from the Phillipines. 

    Don't believe he was too familiar with it.

    They tried to treat it with migraine treatments . Headache and symptoms would return.

    Publication, education, on GCA, PMR sorely needed in U.S. 

    best, Lynn

    Not a "disease for older people" as the head of the clinic tried to explain to me. 

  • I seriously doubt someone from the Phillipines would have had much to do with PMR/GCA if he trained there. Not a lot of Nordic genes floating around in that population!

  • Hi PMRPro,

    Just read the "emedicine" link.

    Subject is GCA and it clearly states that one or both, ESR, CReactive Protein may be normal in diagnosis.

    Agree with his points on CRP and believe that is the case with me. 

    7-20% have neither raised.

    Read with interest on PMR and pelvic girdle. Since at least 2004, I have suffered with the rare disease, meralgia paresthetica (MP), which includes the pelvic girdle. The lateral femoral cutaneous nerve, wrongly, connects to the inguineal tendon causing knife like pains, lateral cramping and spasm in the thigh.

    Have had periods of not walking with this.

    Just spoke with a back specialist who believes GCA and MP are related.

    I was commuting from NYC to Philadelphia for a job when this started. One heck of a commute. Soon walking was difficult. Seeing a specialist for this.

    Very good studies.

    Thank you.

  • Thanks for this!

  • Will check. Thanks PMRPro.

  • Asbeck, you've come to the right place to rant as you know we all both sympathise and empathise with your experience.    I've been where you are now with both PMR/GCA, spondylolisthesis and blood pressure with a mind of its own, plus chronic kidney disease.  I battled through PMR/GCA over 6 1/2 years (including a year undiagnosed which I prefer to forget!!)  BUT, I came out the other side of the PMR/GCA tunnel, and you will, too.  You have done very well to get down to 8mg and perhaps that is proving to be your 'maintenance' dose for a considerable time.  The stumbling block for me was 5mg and after a severe flair necessitating an increase back to 10mg, once back down to 5mg my rheumy kept me there for 6-7 months.  I even refused to believe him when he tried to reassure me that he wasn't expecting me to stay at 5mg for the rest of my life!  Frustrating at the time, yes, but with hindsight it was the best advice and I was able to continue tapering, albeit at a snail's pace all the way to zero.  So keep up that positivity - you will get there. 

  • Agreed.

    My experience is similar. 

  • "@ - Celtic" Thank you Celtic. I'm so sorry for your troubles. It's the attendant illnesses which get to me--chronic kidney disease!!!!! I'm so sorry. I will continue to "try" to do all these exercises, etc. It seems that my blood pressure and sugar readings respond to it. If my kidneys go I won't be able to stand it. Wegner's (something like granulomatosis poly angiitus) attacks the kidneys and lungs. Sometimes I think that this disease isn't exactly within certain parameters. Thank you for your support. I've read you a lot on here. Thank you for your work.

  • Asbeck, just to reassure you, chronic kidney disease is not related in any way to PMR or steroids. In other words, it is definitely not an "attendant illness", so worry not.  Just to repeat, you're doing well......keep it up!

  • Dear Asbeck and Celtic,

    Ms. Asbeck, I am in agreement, - when you said, " this diease may not be within borders.

    As a paralegal and non-profit worket, I've read and 'employed' many medical studies and spoken with many medical experts.

    I believe what you have said Asbeck, is part of what we're working with, here.

    After being diagnosed  with GCA, they found dissecting cartoid and vertebral arteries, which may be linked to arterial inflammation.

    I believe its important to include this perception, when looking at the whole medical picture.

    Thank you for the posts, best, Whittlesey

  • Dear Asbeck, 


    only too well.

    Have GCA. Would also say, keep up the good work.

    Good information on the red wine. I completely cut my alcoholic consumption to about a Friday or Saturday night beer month -- due to worries about the pred "mix".

    Thank you, will try it.

    Would say " stay strong". You are really doing so well.

    To health, continuance,

    All my best,


  • @cjatthesea @PMRpro @Whittlesey @Celtic and everybody else. Of course I could not do all of the exercise which I outlined above. I was determined to devote my life to it and as the Nike ads say "just do it." But I could not. You all knew that I would be unable to do it and responded in lovely ways nonetheless. Thanks. In the last 5 days I have had 3 good ones. Maybe I am re-entering into a less virulent phase of these diseases. As you suggested I have stayed on 8 mg. Only after I have an entire good week will I try to reduce and then only by .25. mg taking 41ish days to get to 7.75. I'm sick. I accept this. Prednisone helps. I'm all in with just grinning and bearing it. Hope that you all are well or as well as can be expected. I didn't want anyone to read the above and decide that they were not trying as hard as I because I was doing all this exercise. I'm simply not. Actually except for the 3 good days I have been in bed a lot. But today is one of the three........ I'll take it.

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