Pain, stiffness, it's all coming back to me now!

[Shastring]

Hi everyone,

So this past weekend brought very unpleasant pain back, my scalp began hurting but nothing as bad as before and didnt last to long but for the past three days my neck is so stiff and achy as is my groin. What a shame that I had been feeling so good before the taper two weeksa ago and never got back to that feel good state since the Dr. put me back on original 10 mil dose of pred. I have the neuro opthmologist on the 16th of this month so I need to wait it out.

I'm just so upset that the pred isnt working now like it did, I probably need a higher dose.

I told my Rheumy today that if does not treat me as if it is pmr at least until the 18th when I see the eye Dr. and help me with the prednisone then I will go elsewhere.  He looked at me like I was insane. I told him that he is not understanding all that I have read here and elsewhere and since he won't try to do as the guidelines say I will be forced to keep searching for a Dr. who will at least hear me out and not shut me up.

This may be a risk for me but I have no other choices at this point, I'm at a loss as to how I can make him see the pain I'm having now after I was pain free. Something is wrong with his form of treatment and I need to find out why this is happening.

Is it possible for pred to just stop working? Is it possible that the lower does is not working and it needs to be higher until I feel good again? Or is it possible that something else is going on but all of my other tests didnt prove that.

Tender scalp, stiffness in neck, shoulders and groin, all of this sounds like pmr & gca which has me far more worried.

TY to all who read this I feel  like everyone here knows what I'm going through and understand more than any Dr. I've seen.

[DorsetLady PMRGCAuk volunteer]

Hi Shastring,

Sorry to hear about your problems with your Rheumy.

From what you've posted before, if you do have PMR and/or GCA then the levels of Pred you have been on so far obviously haven't been enough to get the inflammation under control properly. It sounds as if your Rheumy is not convinced what you have, or he wouldn't be messing about with dosages that aren't enough to do the job! 

Pred doesn't stop working, but it needs to be the right drug for the right illness and be taken at the correct dose. You certainly could have something else going on, which is why your Rheumy seems to be dithering with your treatment, but the tender scalp, neck and shoulder stiffness certainly sound like GCA. 

If you have plenty of tablets you could try increasing to say, 15mg for a week to see if that makes any difference, but if it's GCA then you really need a bigger dose.

As your Rheumy is not helpful, can you speak to your doctor for advice prior to seeing consultant on 16th.

Hope you soon get things sorted. 

[Shastring in reply to DorsetLady]

Hi DorsetLady,

Thanks again, I'm going to primary internist We'd. And hoping to try the 15 mil. To see if it works. My eyes are bothering me, not able to read for more than a few minutes and they are blurry at times so this really upsets me but hopefully by the 18th I'll have answers.

[PMRpro Ambassador in reply to Shastring]

Then you need a sensible doctor who will investigate this properly. If there is a chance of GCA - and scalp pain and all the other things you mention are certainly quite typical, especially the visual symptoms - then it is a medical emergency and not something that will wait until the 18th of this month.

10mg of pred is NOT really enough to get early PMR under control - and it absolutely isn't enough to manage GCA.  GCA requires in excess of 30mg for safety of you have visual symptoms.

PMR can be a prelude to full-blown GCA. If the disease activity was lowish at first you might have presented with PMR symptoms which responded to the moderate dose of pred - but it is now possible the disease activity has increased as the GCA is developing. If the pain responded to 15mg that is a small indicator - but your dose was then reduced too much and too soon - and the PMR symptoms returned. Now you are adding in some that are more in line with GCA.

If GCA is affecting the blood flow to the optic nerve then it is likely to cause the visual problems you describe - and I have to emphasise that it is possible that you could lose your sight if it gets worse.

If the blurriness gets worse, if you have ANY other visual problems such as loss of vision even fleetingly or partial - please go to the ER. immediately, no messing about. Other descriptions are of a curtain across your vision, double vision, anything like that. And insist on being taken seriously.

The way some doctors act anyone would think we enjoyed being ill and taking pred...

[raymck]

Sounds just like what I had when coming off preds after GCA with sight loss in one eye. Still have a fraction of the condition in Club Zero. Echo the advice already to have them check for GCA. Good luck. 

[Jim-CJ]

Hi Shastring,

My wife and I visited her Rheumy yesterday with similar conversations. Luckily, thanks to this site, we know better. My wife has all the symptoms of GCA, which sounds like yours. We have made mistakes in the past caused by listening to Doctors and by our own mistakes. Two drastic flares in a two week period six weeks ago straightened us out. Went back to 60mgs for four weeks and saw conditions improving well. We then started our own tapering method. Went to 55mgs a week ago and will drop only 5 mgs every two weeks until we get to 20 mgs. This assumes symptoms support the plan. Then we will go very slow at one mg drops, using a 35 day cycle for each drop. This is a three year plan! Not something we ever believed in the past that is necessary. But we have already wasted a year and four months doing it the wrong way. So it is time to get real and accept that GCA is for real. Her Rheumy finally agreed to let us do our own thing, wrote a new script, and will monitor her monthly. By the way - when I mentioned this UK site, he blew me off.  WE BE ON OUR OWN WITH THIS SIGHT"S HELP!

Take Care & God Bless,

Jim-CJ

[Shastring in reply to Jim-CJ]

Hi Jim,

How right you are and I'm doing the same. My Dr. also blew me off and told me not to read any more and I finally told him he is the one who needs to read and learn.  Here in the US there is not enough info for Dr.'s and the Arthritis foundation here is not advising these specialists about this disease and therefore there is little for them to know so we are the ones suffering.

I wish your wife the best and lets hope we can all overcome this chronic illness.

Shastring

[PMRpro Ambassador in reply to Shastring]

Part of that is because PMR and GCA are not arthritides - they are vasculitides. It was the same in the UK ten years ago - arthritis charities didn't want to know. The trouble was - neither did what was the only vasculitis group at the time because the changeover in thinking was still very new. Hence the plethora of groups in the UK - we started what didn't exist. There was a forum based in the USA and one in Canada I think, but they "died" soon after. Some of the US people there came and joined us.

Doctors who are that scared of the informed patient should be avoided - no, I know, it's next to impossible!

Interestingly, the latest PMR/GCA pocket textbook has only 4 out of over 30 medical writers who are in the USA, 3 from the Mayo and one from Boston. I got my copy on Saturday when my daughter came to visit and read it on Sunday. It is aimed at doctors not patients but I found very little about management in there that was new to me - some of the immunology was a bit mind boggling at a superficial read but we aren't really needing that. But what is in that book from the top brains in the field is very little different to what you will hear here.

[Pat46 in reply to Jim-CJ]

I've had more help and understanding from people on this site than anyone in rheumy. So personally I'm sticking with all my knowledgeable new friend on here. Thank you all for your help.

[Dovelady]

My GP actually pointed me to this group, she printed  me out the PMR/ GCA organisation info and gave me the phone number of the local contact.  She was on the ball, I was diagnosed within four days of first seeing her three years ago.  If it had not been for the info here I might not have realised I had developed the full whammy so soon. The information on here in the main has been incredible.