Hi, firstly, I am so glad to have this forum, and so grateful for all the support reassurance, guidance and sharing. I have posted before, but I wanted to continue to share my journey in the hope of further feedback, and perhaps it might help fellow sufferers. From the beginning (Feb 2019): I had been feeling quite unwell for 2/3 weeks and went to my GP. She was unable to identify my symptoms as GCA/PMR related and said my symptoms were a bit “vague”. I was given a nurse appointment for blood screening (“results will take about a week”). GP called me early next morning and told me to report immediately to the hospital for immediate assessment as my inflammatory marker (CRP) was seriously high. The assessment confirmed CRP and additional ESR was through the roof. The tests, coupled with the symptoms set me on this difficult GCA/PMR journey. Like most, I was not given a specific diagnosis, but after a day in the rapid assessment unit (seen by Rheumatologist and Ophthalmologist, and others) I was told I had “probable GCA” and this could result in me losing my sight!!!!!.
This post is an update on my various symptoms and “treatment” from that initial assessment until now (7 months) to see if anyone has any similarities / observations that can be shared.
Initial symptoms prompting initial GP visit: a) swelling and pain between the shoulder blades / back of neck. b) headaches, not sharp or severe, just constant throbbing c) flashing “strobe” lights In vision in dark room d) constant pronounced ringing in both ears e) mild facial / eye strain type ache f) loss of appetite with fairly rapid weight loss f) mild fever / sweats g) pain radiating across my upper chest, worsens when breathing in h) physical and mental fatigue I) irritable bowel.
NOTE: No scalp tenderness, no jaw issues, TA Biopsy negative.
Treatment: Pred 60mg, tapering 50mg / 40mg / 30mg / 20mg / 15mg. When cut to 10mg, symptoms: a) bilateral shoulder pain (top of shoulder into neck) b) pain in lower back (lumbar) and buttocks (new and quite pronounced pain in both buttocks) c) physical and mental fatigue d) some mild facial / eye strain type pain e) shortness of breath f) low tolerance to exercise.
Follow up blood tests (2weeks): CRP and ESR normal.
Follow up with Opthalmology (6 month) Eye health / vision OK
Follow up with Rheumatologist (6 month): instructed to go back to 15mg and taper 1mg per week until down to 5mg. I questioned that it felt more like PMR (due to symptoms being more typical of PMR v GCA). Response was “we are treating you for GCA”. Asked about exercise. Response: “no reason to limit exercise”. Shortness of breath “due to swollen belly” (due to steroids) restricting diaphragm / lung function.
Weight now a 132kg (I am 6’ 3” male). Presently on 13mg pred this week, 12mg next week. 11mg week after etc as directed.
I just feel that I am on the very edge. I don’t feel as much pain, but do not feel that well physically and mentally. Struggling somewhat, but hoping things get better as more gradual tapering continues.
All observations / comments / sharing / advice greatly appreciated as always.
Incidentally, I have fasciculations*in my calf muscles (* “spontaneous contraction affecting a small number of muscle fibres, often causing a flicker of movement under the skin”). May be unrelated but I will be interested to know if anyone. Had experienced this.
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Broomser
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Certainly a lot of initial symptoms correspond to GCA. Not everybody gets all the “classic” symptoms.
TAB negative doesn’t necessarily mean you don’t have GCA, just that the tissue tested didn't show signs, doesn’t mean other blood pressure vessels aren’t affected.
Follow up tests should show CRP/ESR in normal range - just proves the steroids are doing what they are supposed to - controlling the inflammation.
Early days with GCA high doses you can taper quite quickly, but once you reach 20mg then a slower taper should be implemented otherwise you risk going below the level of Pred you actually need. Despite what many new patients- and apparently some Rheumies think, the Pred does nothing for the underlying illness - it only controls the resultant inflammation.
Whether you have GCA or PMR or both the treatment is the same - it’s just the initial doses that vary.
Reducing every week is much too quick (even though it may only be 1mg), it doesn’t give you time to know if the current dose is sufficient before you reduce again. You need at least 3 weeks -4 is better - at each dose.
No wonder you are struggling - your Rheumy has/is giving you an unrealistic tapering regime - which I fear will end in failure - as you’ve already found out.
You might like to have a look at this - a more realistic approach to your illness(es) -
Yes, I agree. Prior to last weeks Rheumy visit, I seemed to be doing OK at 15 (previously had to get back up to 15 from 10 to get back under control). 15 seemed to work just right. I was expecting to be advised to stay on 15 for an extended period before a more gradual taper. It is obviously a real issue when the specialists can't seem to get it right. I am inclined to continue the 1mg drop, but as SnazzyD says, I will double the time on each level and see how I feel. Hopefully it will work for me.
I agree with DL. I found it hard enough with withdrawal alone going slower than you so I’m not surprised you feel on the edge. You need to go slow enough to be able to clear away withdrawal reaction and then see if any GCA inflammation is breaking through. Is there any option of negotiating a more gradual reduction?
I stuck to my guns and did my own problem free (apart from withdrawal) taper. At appointments I took the approach of asking why if I was still reducing steadily without problems instead of going up, was it an issue? I wasn’t prepared to go faster and risk 60mg again. I also said I had to live a life and balance it with withdrawal symptoms. One doc even said I probably hadn’t had GCA at all because I hadn’t flared yet! I can’t win! If any had refused to prescribe it, I would have asked if they could put it in writing that they were willing to risk adrenal crisis and which side effect they were so worried about that they saw this as a correct action.
Anyway, after saying all this smiling politely, sticking to my guns I still go home and burst into tears.
If you possibly can you must see someone who will take your PMR symptoms seriously and allow you to taper much more slowly. Given that you are well out of the high GCA dosage now I think you have earned the right to have more control over the speed of the taper. My doctor told me from the very beginning that I would have a lot of say in how the tapering went, and that has, I think, made all the difference for me.
Funny how some doctors think in closed boxes. My daughter in law's father has PMR, but also other conditions, including being on a pacemaker, diabetes, etc. He was very ill near Christmas a couple of years ago, breathing problems, and he was in the hospital on very high dose of pred for whatever it was. Once that problem resolved he was promply weaned quickly off all pred - he had to speak up and remind them (he was still in hospital) that he had been taking 8 mg pred for his PMR, had been on pred for several years!
I do. Mind you, for a year before I got to see her I'd been dealing with another doctor who I think saw me as a hypochondriac old woman, only prescribed heavy duty painkillers I wouldn't take, and didn't even read my blood test results correctly. So, yes, I am very grateful for my current GP!
It sounds like you are getting good advice! Let us know how you feel on the slower taper. I hope that will get you feeling better!! I know I don’t wver want to go back to feeling like I did before prednisone!
I adjusted my pred from 15mg by 1mg very 2 weeks. Like previous attempts, I began feeling unwell once I was a few days into 11mg. So, that’s 3 times I have hit the wall at 11/10mg. I am back to 15mg (my choice). I am staying there for the foreseeable. GP and Rheumy tapering directions have failed to work for me.
But if you were fine at 11 or even 12 - that is 3mg at least less per day being added to your cumulative dose. Just as there is no virtue in suffering on too low, there isn't a lot of point being on 3mg more than you need, it has no effect on the actual disease process.
I would expect that the correlation of the onset of symptoms v dose adjustment is not that precise. Perhaps it is?. I have taken your advice and sitting at 12mg and will wait and see. It’s quite possible that 12mg is very close to the optimum for me right now. BTW, I was diagnosed with “probable GCA” based on very high CRP and ESR, and symptoms that were more like PMR than GCA. So, I might have GCA, or PMR, or both! All very confusing. I have depression and take Sertraline, and I read that it should not be taken with pred. Anyone have experience of this?
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