Since my first post, explaining the Rheumy didn't think I had GCA, and recommended a super fast taper from 60mg Pred to zero in 5 weeks. It went fine, until it didn't.
About 4 days after I stopped, my pain levels increased,to the point of agony before I went to Dr and yes, it's PMR. (3rd time lucky on the diagnosis) this is what I had thought for some time.
Back on to 5mg, which didn't work, so I upped it to 7.5mg which has seen me pain free for 3 weeks.
This morning - all symptoms have returned. Shoulders, arms, neck, thighs stiff and sore.
Should I up my pred by 1mg? 2.5? or 5? and for how long? I'd rather not go to 5 if it's possible to avoid. Thanks for any advice here.
HEADACHE
Also, are headaches part of this? I have had a constant 24/7 headache for 7 months now. Initially it was diagnosed as trigeminal neuralgi, - but it wasn't. Then GCA was tested and eliminatd. Even on 60mg Pred I still had this headache. It wakes me at night, when it seems to be worse. It responds to Ibubrufen. I have had Xray, & MRI , with nothing found. The medical people are saying stress. That was true for the first couple of months, but I have been meditating 2x daily, Qi Gong and living peacefully. Anyone have any thoughts or experience? I have searched but not found anything similair to my situation.
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JoysFollyNZ
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Oh JoysFollyNZ! What a mess they’ve made of it all. I would honestly be inclined to start again at 15 mgs, let everything settle for 4-6 weeks then taper never more than 10% of your dose using one of the tapering programmes in FAQs accessed on this page. Obviously run this past your diagnosing doctor, but it is quite usual.
Because they failed to diagnose your PMR that led to horrible suffering, I would be less than trusting over their dismissal of GCA. Headaches that wake you up need thorough investigation. What tests did you have for GCA? Mine was non cranial and was diagnosed by a vascular ultrasound scan - the only evidence was in my armpit. The consequences of a missed diagnosis of Cranial GCA are sight loss, something you probably know already.
When you have the time and inclination, read more of FAQs about our diseases. It helps to be a well informed patient. Stick with us on here, there is a lot of expertise and experience shared. If this sound naggy, I am sorry, I have just been writing to my daughter and am still in mum mode.
Thanks SheffieldJane I appreciate your input. Getting the runaround and misdiagnosis, or overlooking something seems to be very common with these conditions. When I saw the Rheumy and mentioned the headaches he thought they were atypical of GCA and as I had no other symptoms he felt it unlikely I had it, given the templar biopsy was negative. I have had very thorough eye examinations and all appears to be well. (except for the galloping cataracts! - that's a whole other story) I'm just reading his letter which was for my Dr, and I asked for a copy - despite me telling him I had muscle soreness, and a couple of mornings I could not stand due to intense ankle pain he ruled out PMR.
At the time, my headache was localized to the L side, nowhere else. However, after coming off Pred it was right side for a few days, and after that.....anywhere at all. Top, side, bottom, left right,
Also re the headache Rhuemy prescribed Amitryptyline 10mg. It did nothing, ad Dr's have put it up to 30mg with zero result on headache. I'm going to wean off it.
As SheffieldJane says the normal starting point for steroids for PMR is 15mg. Then a slow taper, say every four weeks. The reduction should not be more than 10% as a rule of thumb. You must have gone through agony over seven months. Push them for another check for GCA. They changed their minds on PMR!!
I think it was me that started me back on only 5mg, because that was the last dose that worked for me. When I did see the Dr, I pretty much told her what I was going to do and she agreed. I think the Dr's I have seen are missing the finer points - as well as some blindingly obvious ones. Hard to trust.....
Biopsies for GCA are only successful if they take the sample from exactly the right part of the temple artery. If you are already on Pred then the sample can be rendered less definitive. Still be on the alert for other symptoms such as any eye sight issues ( an emergency) go to Your emergency department.. Jaw claudication, a sore tongue, prominent temple arteries that feel hard.
If the headaches persist keep at your doctors. It could be the way you were messed about by the first doctor that triggered them.
Any neck problems, arthritis for instance that can cause headaches if it affects the top two vertebrae. Nothing at all in the MRI? Is a vascular ultrasound available where you are? Make a complete pain of yourself until they find out what it is. The cataracts being sorted will help a lot. I have heard great reports, especially if they are linked to your precscription rather than the generic one. Pin sharp vision and no glasses is possible. Good luck!
Although I didn't know it, the MRI picked up an Arthritic neck C1-5. It's not bothered me thus far unless it is responsible for the headaches - and it could be. Last night with my head pounding at the bottom of my skull I pressed my neck on what I guess is either a nerve or artery. It was very tender, but it stopped the headache for a good 20 minutes or so. This made me wonder if it's coming from my neck - although they didn't see nerve pressure from the MRI. The other thing that makes me wonder is the speed with which the headache moves around.
I'm not sure about the Vascular ultrasound, I'll check it out though
'm terrified about the cataracts. I had lasik 20 years ago and it was a disaster. I lost a great deal of vision and the emotional cost was huge. The Surgeon responsible insisted I only needed one or two 'enhancements' I took the advice of my Dear old optometrist and declined as it was not only traumatic, but risky It's not relevant, but it makes me feel better to know that the Surgeon is now in Jail for attempted murder!
My vision is so complex I can't get it done under Public health, so have to go private. I'm very afraid of anyone messing with my eyes but I'm not far off losing my drivers licence so it has to be done.
That is how my neck and base of the skull pain behaves. My husband has become very good at gentle neck massage that seems to release something and it relieves the pain. He instinctively knows where the tension is, it does move about. When you are sure that this is the source of your headaches you may well respond to a good physiotherapist . Or you could train a loved one.
Of course you are terrified by the thought of cataract surgery especially after your dreadful experience with LASIK surgery and that incompetent man ( how shocking that he has murdered someone). This, of course will be quite different. I wonder if they would allow you to have a sedative? You do have special circumstances. They really work well. 5 mgs of Diazepam and you would be fearless but still compos mentis. I had it for my first MRI which terrified me. They don’t bother me at all now. Obviously you will research your surgeon thoroughly. Most fear comes from having no control. You must own as much of the experience as you can - every aspect. Please let us know how this goes for you. The head and the eyes. X
I’m so sorry you are going through this. It sounds terrible and frustrating. I hope you get a skilled diagnostician who is determined to help you figure it out and get it properly treated.
.. and what a complete horlicks your medical team have put you through… so sorry.
Although TAB is not always 100% accurate unless it’s a definite positive that is. It can, and often gives a false negative if the sample taken doesn’t contain GCA c cells which is often the case- they aren’t necessarily spread evenly in artery.
If your headaches respond to Ibruprofen that perhaps suggests it’s not GCA - know mine certainly didn’t….except for a very short while. What exact do you mean by respond? Gone completely for hours, or just for a short time and then return? As for still having them at 60mg, it took at least a couple of weeks at 80mg for mine to resolve… so I think I’d want them to take them more seriously….stress is a cop out…
You haven’t mentioned any vision disturbances- so does that mean you haven’t had any?
I was prescribed Amitryptyline pre diagnosis - and it did nothing for me either.
Usual advice for flare is contained in this link - but have to say IF it is GCA then adding 5mg to existing dose is not going to be enough - but try anyway for other symptoms -
Ibrubprofen gives me six or so hours total relief. I don't have any vision disturbances. It's odd the way the headache moves around, and does it very quickly. At this stage, I'm more inclined to think they are caused by an arthritic neck (newly diagnosed bafter MRI)
Despite the lack of evidence it could be GCA - the increasing symptoms should be waving red flags that the underlying autoimmune disorder is increasing in activity. At such a low dose that could be the PMR worsening or in a flare or it could be LVV or GCA making its presence felt.
But PMR isn't the disorder - it is the name given to a set of symptoms due to an underlying condition and there are several including forms of inflammatory arthritis as well as cancers. Even if the rheumy is confident it isn't GCA - and he can't be simply on the negative result of the biopsy, GCA doesn't always affect the bit of temporal artery they biopsy for a few reasons - he should have checked for other possible causes.
Don't be afraid of more pred - too little is pointless as even a small amount of leftover inflammation will steadily build up and increase the symptoms until you are back at the start, requiring even more pred to get things under control.
I am so sorry you have been through so much. There are some parallels with me, in that my headaches and visual disturbances were diagnosed as trigeminal neuralgia and prescribed carbamazepine, which sent my headaches through the roof. This was followed by GCA/PMR diagnosis and 40mg pred, no improvement so rediagnosed as tension headaches and a very rapid taper off the prednisolone which had caused glaucoma. I was prescribed gabapentin (a nerve blocker) for the headaches and this has worked to some extent. The headaches are managed, I generally sleep well, but gabapentin has its own drawbacks (doesn’t most medication!) Good luck.
Worries me a bit that it was assumed 40mg can be enough in GCA. I have a soft spot for the 3 day pulse therapy which uses ultra-high doses as infusions. If that doesn't work then it isn't GCA - and it is short if not sweet.
Four months after starting on 40mg pred I went to the optician by chance and he picked up that my pressures were very high (about 42 and 38 from memory). I had no idea, my vision had been a bit blurry for a while, well before I started the steroids. I was sent straight to Eye Casualty and given drops, which bought down the pressures. No permanent damage to my optic nerve. I’m off steroids for eight months but I don’t think the hospital will risk taking me off the eye drops. My eyes are quite sore - make that very sore - despite the dry eye drops. It is definitely worth getting regular eye checks while taking the steroids long-term.
Before I was diagnosed with GCA I had huge problems sleeping because of the discomfort. I found that ibuprofen helped a little with the discomfort whereas paracetamol did absolutely nothing. - perhaps because of the slight inflammatory reduction properties of ibuprofen compared with the lack of inflammation reducing properties with paracetamol.
That was a red flag to my physio who suspected pmr and contacted my GP.
Maybe I was just lucky that ibuprofen helped the pain slightly or perhaps it can ease it slightly. Who knows?
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