Where do I begin again, Biopsy was schedueled but after finding my very low vitamin d and blood calcium levels they decided to wait and begin Proli injections twice a year which should start within next two week, taking 50,000 mil of vit d to bring numbers up. I was on 60 mil and Rheumy did slow taper method because he could not do Temporal biopsy until down to lower prednisone level. It took a month and now at 10 mil but have developed the worse pain beneath the breast, for two weeks on left side now on right side, had xrays to see if broken ribs and it was negative but the pain is like a truck ran over me, Im supposed to taper tomorrow to 7&1/2 mil and stay there for two weeks but so afraid to. Dr did tell me if head pain starts to go right back up to 60 but this up and down is playing havoc on me. I am having a headache since yesterday and I took two extra strength tylenol which helped for a few hours and now its back. Overall Im getting so depressed because the pain now is so bad. At night I can barely turn on my side and my shoulders are burning and throbbing so not sure if I should go back to the 20 mil where I felt much better or listen to Dr and continue tapering. My Dr still insists that the pred is poison and he wants me down to lowest does possible but with this pain why would I do that.
Thanks everyone for listening, what would I do without this forum.
Sharon
Wow I am know Doctor but when my pain was at its worst it was not as bad as yours. However when first diagnosed I had to roll out of bed to get my feet onto the floor, then turn to my side table and push myself up to stand.Also when I sat down I had to get down on my knees and get to a coffee table and push myself up to stand My shoulders and legs were very weak and painful. So my first dosage of Prednisone was 20 megs.And that did was not enough after a week. So up to 30 megs the following week after consulting with my Doctor and that dosage levelled my pain to almost Zero and was able function day to day activities normally.
My better half works in the hospital system and has known some patients that take doses of Prednisone much higher, as high as 50 -70 megs. In your case which seems quite extreme I would tend to try a higher dosage.
Myself I hate being on this medication but life is to short to have to suffer through painful ailments and I am somewhat of a believer of "WHATEVER WORKS " go with it. Hopefully it is not long term and that there is light at the end of the tunnel to everyone with this somewhat odd ailment !!!!!!
Good luck to you and thank you for your response
It sounds like even though you say a slow taper method was used you tapered by 50 mg in one month? No wonder you feel so wretched. Can they get that biopsy over with right away so you can commence treatment at a reasonable level again? And why do doctors give us a medication which they then proceed to tell us is poison and we should stop taking it, leaving us worse off than we were when we started?
Neither here nor there, but I suggest that prolia is at least as poisonous in a different way than prednisone. Have you been diagnosed with osteoporosis through a bone density scan? Because if not you should avoid that med, especially as it can cause muscle and joint pain as a common side effect, as well as low calcium levels.
Why on earth is he insistent on reducing the pred before doing the TAB? He should have done it immediately - the longer you are on any pred the less likely it is they will find anything but the evidence does remain for a couple of weeks even on high dose pred. He doesn't sound very clued-up I'm afraid. Though if you have symptoms it does suggest whatever it is you have is active.
And you shouldn't be given the prolia until they know both the vit D and calcium levels are right because it doesn't work if they are low or the prolia may reduce the calcium levels even further which can be risky - and that is likely to take more than a couple of weeks judging by most people's experiences.
Can you find another rheumy or is that too complicated? You are in the USA I take it?
I am in a battle with my rheumatologist about a very similar thing. She keeps pushing me to reduce at her speed. And every time I get down to 10 mg I go into extreme pain. And I take opiates for my back pain anyway and that doesn't even touch the pain of my PMR. And I can tell you that pain relievers do not relieve the pain of PMR. Anyway through the strength of this group I had the courage to stand up to my rheumatologist and tell her that I wanted to reduce on my schedule not hers. She did argue with me and I pointed out that her way was not working. And so after much arguing she agreed to let me try Eileen's slow taper method. I don't mean to be telling you all about me but I just thought you should know that you're not alone in the frustration of a rheumatologist who doesn't know what they're doing trying to run the show. You will learn a lot on this site and as you do you may learn that you either have to educate your rheumatologist or find a new one.
HI,
yes I have had severe osteoporosis for quite a few years, the result of a very early total hysterectomy at 39 and bone debnsity three months ago showed the density of someone ninety five yrs old and Im only 64. Ive even had a few cracked ribs and now they said if I fall it would be very bad. I agree the Dr prescribes meds and then says its poison so go figure but I agree if it works then Ill take it.Today my head aches all over so Im assuming I will fo up to another 10 mil tomorrow, this will now be 20mil and hopefully it will help. Thanks for your reply.
Sharon
Eileen he is not giving me the Prolia until the numbers are up so hes got that right, as far as the TAB I was obn the 60 mil and he said he wanted me down before the biopsy but as of this past Wed he said if head pain starts he will do it asap. I have an appt on Mon morn for all the blood work but as you said Id hate to have the biopsy and it be negative which he said is a possibility. Yes Im in the US Florida, and this Dr seems to be up on all of this but he keeps telling me that my blood work is never elevated and it is just the symptoms that we are dealing with yet if it is truly GCA and my dose isnt high enough I will be in big trouble. He said if my head starts to up the pred to the 60 mil, do you think I can up it to 20 instead? Or just go from the 10 Im at now straight to the 60 again, I hate going up so high all at once but he claims its ok.
Thanks Eileen,
Sharon
Thank you for this reply, is Eileens slow taper the two week taper as well, I dont recall it but do remember seeing it a while back.
Oh no its a much longer taper then that. I'm going to ask you to repost your question to another group call PMR. It's also way be called poly Malaysia rheumatica. It should be in the rheumatological Department. It's on this site but it's another group other than back pain. There Eileen will for sure to see your post and she can give you a hyperlink to the taper schedule. She can also give you some other advice that will be very important to you. I'm still very new to all this myself so I'd rather you talk to her about it. She is very knowledgeable not only about PMR but about a lot of medical stuff.
Going up a lot isn't a problem - and if it is GCA if you don't increase the dose to a fairly high level your vision is at risk - that is one of the most feared effects of GCA. Unfortunately, the biopsy could well be negative, it is only positive in about half of cases anyway for all sorts of reasons but the high dose pred will have made it even more likely.But at least your doctor seems to be as convinced by the symptoms - about one in five patients with GCA don't have raised blood markers, that is something that doses make getting a diagnosis difficult.
We're on the Polymyalgia Rheumatica and GCA forum here amkoffee, not the back pain one.
This link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
takes you to a post with all the info and support resources and in the replies section (just scroll down a bit further) you will find the slow taper tht many people have used successfully.
PS - but you don't need the slow taper yet! First you have to get the pain under control before you can even think of reducing. At first you can reduce in bigger steps and without spreading it over weeks - 10% of the current dose is usually OK and you can do it overnight. It is below about 20mg/day it gets more difficult.
Oh I understand. I do hope you are also doing all the "natural" things for your bones as well, as that can only make the medications more effective. ❤
Oops! My mistake I always get that mixed up.