Hi all,
Diagnosed with PMG a while ago and took 5 days of PRED; symptoms went, and as I wasn't keen to stay on them, agreed with doc to stop. However, in May, it returned with a vengeance. Pains in back, neck, head, sore eyes, temples etc. Saw optitian who scanned eyes no probs. Pain continued. Saw doc, he gave 40mg PRED, which tapered down - again for 5 days. However, in the meantime had bleed in optic vein in right eye - bright light when eye shut. Optitian scanned again and saw it. Said I was lucky it wasn't artery. Not GCA they think, but linked? Hosp seeing me regularly to check it, and seeing specialist this week with a view (ha ha) to lasering blurred vision.
My question is the amount of pain and pulsating feeling I get in my head during the attacks that I've had over the last couple of months. Does anyone else have this? Symptom checker doesn't say about pulsating feeling. Back, neck etc I can cope with but head is really bringing me down. A&E last night, and doc again later today.
If you have PMR symptoms that improve with pred then they really SHOULD be considering GCA. It isn't always obvious from the appearance of the optic nerve, especially in the early stages. And the symptoms aren't always the same - as I say on a regular basis: everyone is different!
Did the head pain etc improve witht he 30mg pred you say you were given? If it did and then returns as you reduce the dose - stop reducing and be more insistent about them listening to you.
Diagnosed with PMG? or PMR? - sounds like you are being treated as a guinea pig. Pred does not cure PMR and if that really is the diagnosis you must resign yourself to continued medication for some time. Unchecked inflammation is just as serious. There is plenty of information on this site about PMR but nowhere does it say it is 'cured' with a short course of pred. I think you are doing yourself more harm by not taking the medication. I am surprised your doctor agreed to the treatment prescribed without warning of the consequences.
Hi Diana,
polymyalgia. Not used to the terminology yet. Previous high dose of 40mg for one day, then dropping for rest of week was my idea. I really don't want to go on steroids, but I think I will have to. Have recently lost 4.5 stone so just don't want to put it on and get either side effects. Back to docs at 4pm to see what he says. Hosp doc took bloods and ESR rate 35, was 27 around time of bleed, but usually between 45-54.
Weight gain with steroids CAN be avoided/managed. Cutting carbs drastically helps - but you have to be good and not cheat. I LOST 36lbs in weight while still on between 10 and 15mg.
Hello
All this sounds a bit 'scary' - particularly the very real possibility of losing eyesight if you do have GCA. Steroids yes do have lots of potential side effects but NONE as extreme as losing vision - and most of these can be managed including weight gain. You are obviously a strong person - that is a lot of weight to lose - and if you do need to take steroids long term - with discipline you can keep weight down with a low carb diet as many here will attest. But in the meantime I hope you get some better-informed (than they sound) doctors or specialists very promptly to ensure appropriate and timely treatment as short bouts of steroids will certainly NOT do what is required and maybe even counterproductive. Many 'resident experts' on this forum will send you invaluable vital info and support very soon and I wish you luck !
Best
Rimmy
I agree with Rimmy. This treatment for PMR is unorthodox to say the least. Your doctor should have told you you'd be better off not taking any steroid at all rather than these short sharp doses. Treatment for PMR is not the same as for many other ailments which only need a short period of time to be effective. Because PMR is an inflammation of unknown cause within the body it's really important to stay on the medication long enough for the inflammation to be effectively dealt with, and then we have to find the lowest possible dose which will keep that inflammation in check, giving you good symptom relief until the PMR goes into remission, which can take years. But be reassured that with careful tapering you do not have to stay at the higher initial dose for very long, and the maintenance dose is usually low enough that side effects are negligible or effectively non-existent. I, too, have a natural dislike of taking medications, particularly ones that are potentially as dangerous as pred, but I have never regretted taking pred to relieve the PMR I'd been suffering from for over a year undiagnosed.
And Eileen is quite right. Having PMR should be treated by your doctors as a serious risk factor for also having GCA. I'm glad the hospital is monitoring you.
Hi all,
just returned form GP and am very confused. He doesn't agree with the polymyalgia now as ESR only 35. Said they should have done more at A&E. I have a consultant appt at eye hosp on Thurs re bleed, and GP is saying to insist on brain scan. That they are only treating the symptom, not the cause. Am worried of course.
Yikes. That ESR is not low, although I know it can also be considerably higher. From what I've learned the idea that ESR is naturally higher in older patients is a fallacy, and simply shows that older patients have more inflammation, not that it's okay. Also prednisone should lower inflammation markers, that's why we take it! I hope the experts come on soon to give you some guidance on how to approach the doctors to get what you need.
Your response to pred, that the pain went away, is often taken as about as definitive a diagnosis as you can get that you have PMR, although an initial high dose can mess that up a bit - but, then, you weren't on the high dose long were you? And the pain came back as you came off the pred?
"Only 35"? And you have been on pred? Nothing to add to what Anhaga said in that respect - she is quite correct.
You really do need a competent doctor.
Hi hurtydeb, I don't know if you have PMR, but if you do, you need the DAMN Predinisone, it allows you to continue to function. I lost weight while on Pred, as everyone has said cut carb; I also stopped eating all process foods. Start walking a little at a time. Good Luck 🙂
Oh yes - need to say: in the vast majority of autoimmune disorders all they CAN do is treat the symptoms and manage them as best they can with one or another drug. Your GP is REALLY showing his ignorance.
Dear hurtydeb, you really have drawn the short straw with your GP. But in one respect I guess he is right - i.e. what causes the body to suddenly see itself as the enemy and starts to attack it causing the inflammation is not known and thus pred is currently the only drug effective in calming the inflammation. I hope you find someone with more knowledge of the condition to reassure you. It is not unusual for a temporal biopsy to be carried out if GCA is suspected. Check out some of the other conversations on this forum - you will find lots of guidance. x
Hi all,
thanks so much for all your help, views and good wishes. My GP asked why they didn't not do a CT scan at Eastbourne A&E but I have no answer. Realise now should have pushed, but assume they know what they are doing! The situation so far is that I have seen tonight a GP at our local cottage hosp, working til 11pm!, after calling 101. She range the hosp and asked why no scan, and told me to push for it on Thursday at the eye specialist. They seem to be dealing with the symptoms, not the cause. She has told me to up the PRED to 40 for the next couple of days, see my GP (who is usually pretty good) on Friday to stay on a lower dose. She has given me some anti-bs as she thinks there is probably poly and an infection, and told me to get a good night's sleep with co-codamol. I also take citralapram so will be rattling.
My history is of very high ESR I.e. 45-54, so 'only' 27-35 is an improvement. I am 62 with no other health problems. I'm no expert on what drugs can be taken together as usually a couple of paracetamol does me. I am going to try to see a rhumatologist privately. I do seem to being pushed around, not like me at all, must be cause not well. But will make an effort, and have told hubby to chip in on thursday.
Hi Michdonn, thanks for the info. I am a dog walker on a one-to-one basis and have my own dog so generally walk a min of 3-4 hrs a day, swim and gym now I have a shiny new knee. I don't feel so bad out in the fresh air.
Good I love being outside, but prefer being on my bicycle or my skis, but trying to walk 5 miles a day, about 6 weeks ago I was happy just walking 1/3 of mile, Pred you can not live without the DAMN stuff!
Good for you, what type of dog, I am a dog lover! 🙂
"My GP asked why they didn't not do a CT scan at Eastbourne A&E"
Because at a guess you didn't present with any symptoms that directed you towards a CT. This isn't the USA where they do CTs at the drop of hat! A CT won't help diagnose GCA - and probably wouldn't add to what they could see of the optic bleed.
Oh yes - forgot - the pred you've had has obviously been enough to reduce the ESR some. But how ANYONE can say you don't have a raised ESR is beyond me!!!
I recently came home from hospital following a biopsy on a temporal artery which showed I had Bilateral Temporal Arteritis. My symptoms are crushing frontal and temporal headaches and sometimes I feel that my head will explode. They started me on 60mg pred now I am on 55mg. My problem at the moment is the right kidney(I only have one) which often plays up if i am poorly with something else he has decided to be infected, now my GP is wworking out what I can take in line with the GCA.. He has increased the pain relief I ake as Paracetamol did nothing to relieve me. I already take Morphine for kidney, and now written up for Tramadol. The other evning the painnwas so bad head and chest/back etc that I took Pimms/diet coke and a slug of morphine which gave me a sleep away from the pain. I told him (gp) and he said 'remind me what you did for a liing before you retired'. Pain is the worse enemy and I would do just about everything to releave me of it.. I am sorry you are going through it as well but pains are awful and I was told that i would see the rheumatologist but only saw him in hospital.
I'm so sorry yuo are suffering like this. Hope your doctor finds something safe and effective for you. Hugs.❤