TO INCREASE PRED OR NOT? 3 WEEKS IN BED.

[Missus835]

I have been incapacitated due to back muscle spasms and low back pain for well over 2 months. Mostly on the bed for 3 weeks, but able to use walker and now sit on loo and to eat meals (if I eat quickly). When walking without walker, my back gives out after a few minutes. The last few days my upper arms and shoulders have been aching and waking up with headches; yesterday boardering on migraine. These seem to be starting from neck and muscles at the base of skull and possibly related to the rest of the muscle thing or PMR breakthrough pain or a flare.

Had new ct scan over a week ago and still nothing from rheumy, even though my former neurologist's assistant forwarded an email I wrote trying to get help. In the meantime...nothing. Taking way too much ibuprofen, acetaminophen but it is the only way I can function.

Right now I am at 22.5 Pred having decreased about a week ago from 25 mg. My thought is to bump it up by 7.5 mg. i.e 30 mg., to determine if it is a PMR flare.

Headches do not go away with ibuprofen and can barely push the walker around, this morning, which so far (even though I did wake up for which I am eternally grateful), is a write-off.

Your learned thoughts please?

[PMRpro Ambassador]

How much ibuprofen are you taking? 3200mg a day ibuprofen and 3000mg/day acetimophen are the maximum doses and if you are exceeding that you are putting your health and possibly life at risk due to organ damage. Taking ibuprofen can itself cause headaches - and obviously it won't stop those headaches.

If you were here and probably in the UK you would be in hospital - to be left in this state and self-medicating like this is ridiculous. I have serious doubts that this is "just" PMR when it isn;t being controlled by this much pred. You need proper medical care.

[Missus835 in reply to PMRpro]

Absolutely but ER here doesn't seem to think so. A bunch of asshats. 3000 mg. Acetaminophen 1600 IB. The ibuprofen I take 1.5 400 mg. Caplets. Last dose is 400 (1 caplet). That is the total daily Pro. Soon they will admit me due to poor mental health and to top it off this morning I have diarrhea, didn't quite make it too the ruddy loo so very rudimentary cleanup to say the least.

I understand what you are saying. A friend of mine's son went to one of our best ER, throwing up blood. They left him waiting for 30 hours and sent him home with Midol.

I have been to ER at least 10 times since beginning of May. I think they're glossing over me now. Like "here she is again". The best way is via ambulance at $146 a pop, which I cannot afford. The last 2 bills are still on the kitchen table.

Thanks Pro.

[PMRpro Ambassador in reply to Missus835]

Then unlikely to be the ibuprofen - but that is also not enough to be useful. 800mg is the starting flooding dose that occupies all the receptros that allows it to work effectively. I find that lasts almost a full 24 hours and then 400 is enough to top up.

I thought the UK was a mess ...

[Missus835 in reply to PMRpro]

Well then I will have to up my morning dose of Ibuprofen. I take the acetaminophen at the same time. Also on 2 PPI per day (Rabeprazole). Take the Ibuprofen and Acetaminophen with food. Have you ever gotten a taste or feel of the Ibuprofen in your mouth. It actually burns. Sadly, what does it do to our stomachs...Nor do I think it is "just" PMR. This rheumy has a degree in internal medicine as well as one in rheumatology. I have been "seeing" her for over a year. As long as it was PMR and all she had to do was fill Rx for Pred that was just tickity-boo, but add something else to the mix? Nothing.

Shopping around for another is not an option here in good old Halifax, Nova Scotia. Maybe a complaint to College of Physicians and Surgeons, although it would not be of immediate help. Heron has suggested my MLA and I'm thinking my next move will be her.

Thank you ever so much for your quick response.

[Mayadill]

Oh Missus, I wondered how you were doing and of course vainly hoped things had improved. As Pro says, you need to be in hospital. Or maybe you don't - maybe you need just one competent caring physician to sort things out. The reputation of Canadian medicine takes another nosedive. It's all appalling, down to cost of the ambulance. This situation, she muttered uselessly, cannot go on. I do so hope someone does something sensible. Lots of hugs.

[Missus835 in reply to Mayadill]

Thank you Mayadill. One competent physician would be amazing! They so seamlessly pass the buck. I'm still in a holding pattern over here. When you do go to ER you have to walk them thru the whole ruddy medical history even though it is in their system. All my Rheumatologist does is type notes. No feedback. Ask her a question and she's so busy typing notes she replies without looking at you. Can't stand her. Utterly useless and I've received so much more help from our forum I don't actually need her, but then I think best not burn that bridge. Take care my friend.

[Raewynne]

Sounds terrible.My heart goes out to you .Do you have some help at home?Have you thought of seeing an osteopath or a kiniesiologist.They may be able to help with the back pain and headaches if it's structural. Sending prayers

[Missus835 in reply to Raewynne]

Thanks Raewynne. I really do have to find a different practitioner. Cost is an issue. So it would depend upon that. My family comes in to help.

[moonieboy9358]

Did they ever give you something for muscle spasms? Your headaches could actually be caused be the tylenol and motrin

[Missus835 in reply to moonieboy9358]

Yes. They gave me Flexeril which hasn't worked. Just makes me drowsy. The headaches have just started coming back this past week. Similar to those at the start of PMR which was finally diagnosed Jan. 2022. Thanks for your reply Moonieboy.