Re: GCA, rapid tapering and having a short term, mild problem speaking and finding words common in my job. Any experience with this?

I have been diagnosed with GCA and PMR and had my dose of prednisone tapered too rapidly. At 5 mg my SED rate & C reactive protein were higher than normal. I experienced probably what were PMR symptoms at a pain level of about 5 on the 10 scale. Upped the Prednisone to 7.5 mg. on April 18 and PMR symptoms mostly went away. Yesterday, I was on the phone at work talking to a client. I was having trouble finding words which I have used in my job for 35 years. I began to speak somewhat haltingly and I began to stammer a little. The words mostly came so that I could communicate sufficiently to have the client (who knows me) come in for a conference, but this was very odd. I had a headache basically in my forehead. However, the headache was nothing like the symptoms of GCA before I got the Prednisone. I have stiffness, mostly in my back, but I try to exercise and exercise might be the cause. Of course, I'm worried that there was some reduced blood flow to my brain which resulted in this unusual symptom. Does anyone have any experience with this?

20 Replies

  • I had periods of feeling like this too....thinking dementia was creeping up! No it is the illness and / or the drugs. As you reduce and start to get well you will feel and function normally again

  • Ah. I feel much better. Thank you so very much!

  • Have experienced this on a regular basis. Right now not bad, but have had times when communication has proved difficult! I haven't any real answer as to the cause, but I think it is a mixture of PMR and Pred. If it happens when I am speaking, all I can do is slow down and choose my words deliberately. Have had years of jobs reliant on phone communication, never had anything like this before. In some cases have been able to explain the problem and the family never know if I'm going to be able to speak to them or not!

  • Thank you very much. Even that the problem is PMR makes me happy!

  • Perfectly awful feeling.

  • I'm sorry: do you have GCA or PMR or GCA with PMR symptoms? And when were you diagnosed? If it was GCA then you shouldn't get to 5mg for at least about 2 years! I'm sorry to sound picky but this is a problem I have on this forum, so many people say they have "GCA and PMR". If you have PMR on its own you come into one classification. If you have GCA you come into another - even if you have stiffness and pain like PMR that is part of the GCA.

    If it was GCA then it is unlikely there was significantly reduced blood flow to the brain - that would be more likely with another form of vasculitis. I "only" have PMR but for a while I also searched for words, had problems with spelling (sort of dyslexia) when typing and have had two episodes of transient global amnesia. I've had CT-scans and MRI scans and nothing untoward was found. It will improve with time.

  • Thank you. I know that you really know about this stuff, and I appreciate your willingness to talk to me. I'm sorry that you have had to have CT-scans and MRI scans. I can't imagine "transient global amnesia! I think that nothing could be worse. I believe that the symptoms that the people on this cite describe for PMR are worse than GCA. The word "wheel chair" jumps out at me. But my fear with GCA, which apparently is less painful, is for a stroke-TIA. So I would be happy if I wound up with only one, or the PMR part of the 2 pronged disease so long as it stays at the relatively manageable level which besets me with the Pred. I don't suffer with PMR as much as most on this site and I think that I did not even before my diagnosis. I have been diagnosed with both GCA and PMR. I had a temporal biopsy on 08-Nov-14 after having 9 days of 60 mg Pred. Before that I had 2 separate months of 15 or 16 days each of some Prednisolone. And some for 4 months before that. It was all for "sinusitis." No giant cells were found in the biopsy, but apparently the condition of the artery led to a diagnosis of GCA. Every doctor said that, the Rheumy, the neurosurgeon and the ophthalmologist. I had a 79 SED rate and a 6.13 C Reactive Protein with anemia. I have never had perfect eyes, but during all that time (before the diagnosis) I became a little more cross-eyed and a little more near sighted in the left eye (the side with the inflamed artery). I also was diagnosed for the 1st time in January, 2014 with 4th nerve palsy in the left eye. Either it was new or my prior ophthalmologist missed it. I also lost about 25 lbs.; had constant fevers, sometimes of 102 degree F, felt like I had the flu, stiff, sore, terrible head and ear ache and ache on side of nose, eye flashes, tiredness, etc. Once they suspected the GCA, the PMR was obvious, but I had thought that it was some kind of arthritis and was why I sought out a Rheumy in case it came back. It immediately abated with a relatively small dose of Pred. I was able to walk, but strangely, not bend hardly at all from the waist. I was able to drop down slowly in order to sit and could even get on the ground with something like a deep knee bend, but it took forever--minutes and was painful. The Rheumy keyed in on the "cross-eyed" eyes, which suffered "flashes" one day after I saw him, took some blood and scheduled me for surgery all in about 18 days. Since I had no giant cells I had decided that I had had the disease, but that I was already in remission by the date of the biopsy. I was stupid. The Rheumy sort of let me in on the situation slowly, because I couldn't believe the extreme worry about my eyes. I have never been sick, and this potential diagnosis seemed crazy. I had the GCA symptoms (what I consider in a bad way) from April through September 2014. I had the PMR symptoms from sometime in August through Sept 13th (one day after I had the 1st day of a burst of Prednisolone). I had sinus surgery on Sept. 16, 2014 and actually this and quite a bit of Prednisolone before and after made me feel better. The neuro ophthalmologist tapered me rapidly and I definitely regained the symptoms of PMR with not great blood reads. He thinks that now I do not have GCA. I don't know what the Rheumy thinks, but he wanted to taper me very slowly so I would not have a flare. I went from 20 to 18 in 2 weeks, then eyes flared and I acquired the neuro-ophthalmologist, then he adjusted the Pred: 30 mg for 9 days, then rapidly down 5mg every couple of weeks, staying on 10 mg for maybe 3 weeks, and 5 mg for 4 weeks and a relapse with at least the PMR, but not as bad as the initial bout, and definitely not bad at all compared to the patients on this site. Now I am at 7.5 mg since 18th of April, 2014. Of course, you're right. I tapered too rapidly. But I appreciate knowing that no one seems to have had a TIA. Thanks again. I hope and pray that I don't keep the PMR at the level of most people on this site, to whom my heart goes out.

  • I meant to say before - the transient global amnesias were fine for me - I was neither aware of them nor could I remember them afterwards but it was fairly hair-raising for the family at the time - I had a short term memory of about 3 mins! Both times it had passed by the time I had the MRI (very noisy) but both times the CT scan was done immediately and I "missed" it which really ticked me off! It assured me a lot of tests I wouldn't have had otherwise and which indicated there were lots of bits that were perfectly healthy :-)

  • Obviously you have a very good attitude. Still, Transient Global Amnesia has got to be terrifying. I remain slightly worried for all of us, that although the brain is a wonderful thing, it might be getting sporadic reduced blood flow from the diseases. It seems that everything else is subject to reduced blood flow. Why not the brain? But even so almost all of us seem to wind up with our brain in tact. Wonderful organ, the brain. :-D

  • Re-reading this, maybe I just have GCA with PMR symptoms. The docs said PMR as well as GCA, but I don't know if there is a diagnosis for PMR. Thank you. This is very insightful. Even before I got much, much "stiffer" and much more sore, I was stiff and sore with what seems to have been diagnosed as GCA. And I have never been as sick with PMR-like symptoms as have the people on this site. Again my heart goes out to you and them. And I am looking at a future long, long time on Pred. I was stupid and maybe so was one medical professional. Methotrexate has been suggested to me along with the consideration that I need it because the Pred dose will continue for years. I've read what you have to say about that, and again--thank you, thank you, thank you.

  • Yes - that sounds fair enough. They have done a biopsy and seen changes, you have GCA. The biggest risk is to your sight although long term it is recommended that GCA patients take low dose aspirin to avoid the risk of cardiovascular events which ARE more common in patients with a history of GCA.

    This paper, aimed at GPs primarily and written by one of the top UK PMR/GCA consultants, describes an appropriate treatment with pred and reduction scheme over two and a half years which is reasonable. You may NOT be pred for a "long long time" - I know at least one lady who was off pred in 2 years and others who weren't on pred too much longer. You are actually more likely to get off pred in a few years if you have GCA than if you have PMR only - though I suspect it has more to do with slower reductions to be honest. The Mayo clinic speaks of "cure" in GCA, they don't in PMR.

    But have a look at this:

  • I read the article. Thank you. I have accepted at least a couple of years on Pred. If it's very much longer than that--I'll deal with it then. It's wonderful that you volunteer and that all the wonderful people on this site jumped in to assuage my fear of a TIA in the making. Also I have not had good direction on what to take with the Pred, when to take it, etc. The article helped me with osteoporosis prophylaxis, bishposphonates. And you helped me with low dose aspirin. The Pred gave me Type II Diabetes. Now that my does is much lower I can exercise and control it some with a tread mill. Hopefully that will satisfy the endocrinologist. And I will ask her about the bone loss drugs. I am scheduled for a bone density test. I suspect that even my Gynecologist can help, especially if the scan is not good. So the goals for this site have certainly helped me precisely as well as emotionally. I am grateful for all of the responses which I have received.

  • Picky is good. That's probably exactly what it is...reduced blood flow to the brain.

  • It's happening to me too and I'm also forgetting peoples' names! No rapid tapering for me as I have PMR not GCA so I think it's the steroids causing the muddle-headedness. I cracked an egg straight into the green waste bin the other day instead of into a bowl, for example...

  • Thank you. This terrible, but I feel a little better that it's not a stroke. These are crazy diseases.

  • Thanks you are all making me feel better.

  • Asbeck, I have GCA only (diagnosed August, 2011) and have had a TIA. However, I am not writing this to frighten you, but to reassure you. In August, 2012, fully recovered from the TIA after a week in hospital, I posted my experience on another forum and had many replies from sufferers of GCA/PMR.

    They were all very sympathetic, BUT not a single person reported having had a TIA or stroke themselves. As I am in my middle 80s, I am of the opinion that it was my age, rather than the GCA or Preds that caused me to have that minor stroke. Try not to worry about it.

  • I have read that rarely a TIA can be a symptom of GCA. However, the books and articles say it's a rare side effect. I hope that you are OK. PMRpro recommended low dose aspirin and I will be sure to take it. Conflicts about Pred and stomach bleeding scared me, but I take Nexium, and I am going to pop those aspirin! You are lovely to reassure me after the harm you have suffered. Thank you.

  • Diagnosed with PMR a few months ago & when first taking pred this happened to me. Scared the wits out of me. I simply could not think and form sentences at times. I referred to it as instant dementia. Called my rheumatologist & confirmed that this does happen to some people. Is it PMR or pred...he said could not say for sure. Am now taking 20mg & for some reason the memory loss & the side effects have gotten much better. Thanks heavens.

  • This all sounds so familiar to me - from cracking the eggs into the waste bin, Badgergirl - to being unable to say my husband's name. I knew what it was, but I just couldn't form the word. Steroid fog as far as I am concerned and now I am on 5mg (and have been for some time) I am almost back to my normal 'normal' and not my steroid 'normal'.

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