recently diagnosed

[pwalker801]

I was diagnosed with Polymyalgia February 2018, had temporal biopsies bilateral 4-4-18 and tested positive for Giant Cell/temporal arteritis . They have bumped me up from 20 mg prednisone to 60 mg prednisone daily. I get along pretty good thru the day, but every night between 2:00 - & 4:00 a.m. I get this terrible pounding head, jaw, neck pain, with swollen glands and sore throat. It is miserable, very very painful by the time I get up and move to the recliner, take pain pills, I've been up a long time and then too exhausted to work the next day. so my sleep pattern is all messed up too........Is this consistent with GCA? And do you have any suggestions?

[SheffieldJane]

Hello pwalker801 and welcome to the site! You must be reeling from your double diagnosis whammy. Now you’ve found us, you won’t be alone in your journey. There is plenty of experience and expertise to draw upon and a lot of kindness and humour to get you by.

It sounds to me as if these episodes that you describe occur when the body naturally sheds inflammatory substance into the blood stream and you need to head this off. I would try taking my Prednisalone at that time, with some live Yoghurt and a little honey, unless you are on a PPI to protect your stomach already. Even better if you could take it an hour before.

Definitely report this to the doctor though. I developed raised blood pressure quite quickly. I am also on a beta blocker.

What time do you take your Prednisalone now? Could your symptoms be occurring when the large dose hits your system? For instance if you take it at night? That is another theory. You need all this energy for the daytime. So I would take the dose early morning when you are going to get up and be active, in that case. If you think it is side effects.

I am glad they caught your illness. You shouldn’t be trying to work right now. You have a serious systemic illness that could have cost you, your eyesight. I hope you have a decent employer who will understand that you need to be on sick leave for a while.

Take good care. There will be more advice forthcoming when the U.K. wakes up. I am sure. Where are you currently?

[pwalker801 in reply to SheffieldJane]

so appreciate your response, very helpful----I've been going back and forth about retirement, I will retire before the end of the year anyway so trying to make the decision to do it early. I've worked for an optometrist for 24 years, in October it will be 25, so I'm pretty well aware of all the vision problems that can occur.---would love to hit the 25 yr mark but I might not be able to. I take 60 mg prednisone in the morning and ibuproferm or tylenol during the day. Primary Dr. did start me on something for my stomach. I did have a better night, slept in bed all night, first time in months. I live in Nebraska, right in the middle of the US. and where do you live?

[SheffieldJane in reply to pwalker801]

I actually do live in Sheffield, Yorkshire UK. Kind of North of the middle of England.

Did you alter anything that helped you to sleep through?

Ibuprofen is harsh on your stomach with Prednisalone and not recommended. In fact Pred. Is our painkiller really, nothing else has much impact on the pain from GCA or PMR.

I can understand that 25 year goal. I have had to let go of a lot of goals along the way. Sometimes, get up, have a shower, then sit down is enough of a goal. Take care!

[Hidden]

Hi pwalker801, Welcome. Sorry about your diagnosis... I too have both GCA & PMR and was just diagnosed in November 2017; I consider myself a "newbie" here, as there is so much to learn about these diseases, corticosteroids, tapering down, side effects, withdrawals symptoms, etc, etc, etc. As Sheffieldjane said, you will find lots of experience and expertise here on this site... It was (and still is) a godsend when I was first diagnosed. In the beginning the higher doses of Pred had me up every night from about 2-5; and yes, I always had a sore throat, sinus issues and felt like crap, but really hyper and jittery. That got better with time, although I'm not sure why as I am still on high doses (50mg) of Pred. I wish you the very best and want you to know you are in good hands on this site! The experts will have your back! Best of luck.

[pwalker801 in reply to Hidden]

Hello mamici!, thank you for your reply, I can already see where this site will be very helpful. Thank you for responding!

[jinasc]

I would advise a telephone call to your Rheumatologist, just call the Secretary and s/he will respond and you should get a return call and advice. You have just been diagnosed and not everything will be straightforward until you can get a handle on it and learn.

Getting your body clock to understand that they are having to deal with a major change can take a bit of time. Your adrenal glands have been completely knocked out and it could be that beforehand this was the time that they would have gone into production of the natural cortisol you need to get you through the next 24 hours.

I did run into a similar problem and it was resolved eventually, but as we are all different you really need to make that call.

When you can visit the websites of PMRGCAUK and PMR&GCAuk North East Support and see if there is a support group near you. Read as much as can you take in and you can download information from both of those websites and it is hard information.

[pwalker801 in reply to jinasc]

Dear jinasc, My primary Dr and rheumatologist both have known about these symptoms, its why they ordered the temporal biopsy, in retrospect it should have been diagnosed much early, but nothing can be done about that now. I did have a better night, slept in bed all night without pain, so hoping this will be the start, and I can get my sleep pattern adjusted. Your comment about natural cortisol makes so much sense to me. The pain would start between 2:00 & 4:00 a.m. every night--it seemed so strange, but now that makes sense. Thanks so much for responding--I can see where this site is going to be really helpful.

[PMRpro Ambassador]

I agree with jinasc - you need your doctor in on this and asap. Do the pain pills help?

I'm also assuming you are in the USA? In which case - no support groups on the map I'm afraid.

[pwalker801 in reply to PMRpro]

thank you for responding, I can see where this site is going to be very helpful---and yes in the USA,

[Hindags in reply to pwalker801]

I tried sending you a reply late last night,but it didn’t seem to go through. I was diagnosed with PMR in Dec 2017 and had similar problems.

My Rheumy prescribed delayed release Pred, called Rayos. I take It at ten pm and it is in my system and ready to deal with the inflammatory dump so I no longer was awakened by that pain and got up in the morning without stiffness. Rayos is expensive, but my insurance, Kaiser Senior Advantage, covers for me.

I believe that the difference between 8am dosing with immediate release Pred (which can take an hour to reach maximum potency) and the ten PM dosing with Rayos has made the difference in my ability to continue working.

Everyone's experience is different, and PMR is a bit of a different beast than GCA, but this might be worthwhile discussing with your doctor if the higher doses of the immediate release doesn’t stop this middle of the night pains and awakenings.

Good luck.

[jinasc in reply to PMRpro]

How do you spot the USA?.

I wish that after the pseudonym the country would be useful.

[PMRpro Ambassador in reply to jinasc]

Prednisone, the way the date was written plus just general style of how it was written...

[jinasc in reply to PMRpro]

Ta, never connected it ---------age related!!!

[Rugger in reply to jinasc]

"Primary Dr" - we'd say "GP".

[pwalker801]

My primary Dr and rheumatologist are both aware of the night time pain--thats why the temporal biopsy was ordered. Thanks so much for all the comments, they really have given some perspective to this issue.