Update to 2:00 AM inflammation and new rheumy

[Mstiles]

Warning, long complaining session ahead ...may want to save it until Monday !

Boy I was certainly naive when I posted earlier about my short rheumy visit, being upset about a 10-15 minute appointment and not getting my questions answered. Her instructions were, “keep reducing pred”., your blood tests are fine”, and out the door. guess 10 minutes is the norm now.

I had been healthy at 74 and on no medications before all this started last summer first with Graves’ disease and then PMR/GCA Jan. 1, 2918. My GP was not so rushed. I’m in the US. but this seems to be happening all over now.

So after getting fired by my first rheumy at the beginning of April, my GP and the new rheumy have tapered me from 37.5 to 25.0 in 3 weeks. Before this I had been on 40. since I was diagnosed.

This taper has been OK for the most part, with some withdrawal symptoms the first few days after reductions. PMR type muscle pains, heavy legs, etc......until the last reduction from 30 to 25 three weeks ago. I had the usual withdrawals at first, but after a week or so began getting more symptoms.

Three weeks ago my son who lives with me and has health issues of his own, also broke a bone in his foot and is on crutches and I’m caring for him plus doing all the chores, cooking, etc, we usually share.

Last weekend i had some back of the head pain and more neck pain. Talked to an on-call nurse, not the doctors office, who was concerned and very thorough, “if more head pain, take more pred, or go to the ER, you may need to go slower on your taper”. This nurse was more thorough, knowledgeable about GCA, and concerned than any medical professional I’ve had on this whole journey. .

The head pains got better, I took Tylenol at some point. So don’t know if all the tension caused the head pain, but the neck, head, shoulder, pains felt similar to what I had before diagnosis, just not as severe.

I saw my rheumy again last Monday and told her what was going on with my son at home and before I could ask if the PMR type pains or head pains or more stress could mean for the pred dose, she was out the door. “Your bloods are fine, reduce to 20, there are other drugs if this doesn’t work, Actemra).”

I SO don’t want to have to fight about symptoms, reducing, being heard and listened to again! I see people post about this all the time —the docs that only go by blood tests, don’t think stress affects the disease, etc. GET OFF PRED AS FAST AS POSSIBLE”. too fast tapers, etc. Not being heard is major stress!!!

Yesterday I had kind of a meltdown and got angry with my son!, not fair to him!, I was so depressed and tired I binged on chocolate and chips,,,paid for it with stomach pain, (the chocolate did help though!)

I’m still on 25 mg, I did not go down to 20 last week as rheumy wanted me too.

I saw my eye specialist last Wednesday, she saw no damage from GCA, but I have some double vision reading. She wants me to monitor it to see if it is from my ancient glasses, Or if it could be concerning. I need a new prescription).

Also my tinnitus is a lot worse.

I’ve had a lot of pain in my right hip(new), a day of weird pain and bruising in my thumb joints?!, lots more osteo pain in my right knee, ( osteoporosis before PMR/GCA but pain is a lot worse when walking now).

Are there other things that could be causing this I should be tested for and the taper is actually Ok?

I’m so stressed trying to decide what to do, should I call my rheumys office about the symptoms if she will just discount them anyway and go by the blood tests? I have an appointment again in 10 days and if I haven’t reduced she will want to know why I’m sure. On our first visit she did tell me she wanted to know about any symptoms, but that didn’t work at our last visit.

I’m still confused about reducing if you have symptoms.

I feel like staying at 25. for the next week and see if I can do anything to get more rest and if I feel better. My son has to be off his foot for another 2 1/2 weeks, then if X-rays are OK he can do more.

Oh and my car has broken down, major financial issues, family stress with my sister who is partially supporting us, I could go on but I won’t!!!

Thanks for reading this long rant! It just helps to get it off my chest to those who understand.

[DorsetLady PMRGCAuk volunteer]

Hi Mstiles,

No, the taper is not okay. Too fast for anybody, let alone with the added stresses you have in your life just now.

Personally I would stay at 25mg until you see her next, she may not be happy, but there is no point in reducing as she wants - you’ll just make the situation worse.

Make a note of all the things you’ve listed above, but as briefly as you can - just bullet points, and when she asks you why you haven’t tapered pass her the piece of paper and say - too much stress in my life at the moment so I didn’t think it sensible to reduce.

If she mentions Actemra, say you’d prefer to go down the Pred only route, but with a sensible tapering plan!

You’re paying her, not the other way around!

[Mstiles in reply to DorsetLady]

Yes, I’ll move faster at the next visit with a printed list of bullet points. Thanks Dorset Lady. Seems like your rheumys over there in the UK are becoming more amenable to how long it takes, result of all the hard work of you and all the work of the forum.

[SheffieldJane]

Actually even though you are feeling out of control and under considerable stress there is a rational part of you overseeing everything and making the right decisions. Of course it is ludicrous to reduce any further when you feel so symptomatic.Lets hope that your Rheumatologist was just having an off day and will have time to give you a proper consultation in 10 days time. The additional pains and osteoarthritis pains will be due to the extra duties you have had to undertake. In addition to that we can have a return of old pains as we reduce Prednisalone, because it tends to help and mask everything. If painkillers are helping it points to a cause other than PMR. Well done for getting reassurance from an eye specialist too. I have recently had new prescriptions all round for my eye glasses and contacts, horribly expensive but I can see better.

No wonder you flipped your lid with your son - we all do it and the pressure has been intolerable. Help him to understand.

I think it is a good idea to make a bullet point list of all your current symptoms, with a copy to leave with your Rheumatologist.

Money worries and your car trouble certainly put the tin hat on things. I am sure you would be helping your sister if the situation was reversed. I am glad she is able to help.

Your symptoms are not behaving in a typical way that makes them hard to read, but you are making more physical demands on your body which probably explains them to an extent.

It’s awful that you have the double whammy of Graves’ disease and PMR to contend with. I also have Graves’ disease but since the 80’s and I barely notice it’s contribution to how I feel now. I used to feel really overwrought in the early days though, like a piece of stretched elastic. So be kind to yourself, you have a lot going on.

I agree that chocolate does help like nothing else sometimes.

I hope some of this helps. Getting things off your chest will.

[Hidden]

Ohhhh Mstiles, I had such high hopes for the new Rheumy! : (

I agree with DorsetLady and SheffieldJane; to much, too fast. They have given you some good advice so I have nothing of value to add... except be prepared at next visit and good luck!!!!

[Mstiles in reply to Hidden]

Thanks mamici, it helped a lot to just vent! Probably journaling would help if I could keep my thoughts together long enough. I know I just worry too much, maybe things will smooth out by my next visit with her next week.

Hoping for the best❤️

[Hidden in reply to Mstiles]

I'm hoping for the best with you...

Journal anyway!!!! It doesn't matter if your thoughts are "not together." Just write whatever comes to mind. It will be for "your eyes only anyway, and will help you organise your thoughts, identify your fears, manage your anxiety... It's a WIN/WIN!

[Mstiles in reply to Hidden]

❤️📓🖋

[Hidden in reply to Mstiles]

YIPPIEEEEEEE!

[Hidden]

Everyone has said what I would say. If you have enough pred for 25mg stay there.

Re blurred vision. Most likely pred. You sound like you usually do low-carb programme with blowouts that are normal and understandable. I wouldn't get new glasses yet. I had to use my prescription varifocal with a pair of +3 shop bought 5 £ glasses on top when I was at higher doses. I am at 8mg and finally feel eyes had settled enough. But 2 hours after food or pred my eyes a bit blurry. Oh try eye drops if you haven't. Any that can be used with contacts are suitable.

[Mstiles in reply to Hidden]

Thanks poopadoop,

Yes I have enough pred. Practical advice about vision, confusing when being so nearsighted and using glasses, contacts, readers + contacts, etc. it will eventually settle, as long as I see the eye doctor to check I feel ok.

[Daylily2000]

I wonder if you take your prednisone dose in the A.M. or P.M. if A.M. you might try switching to P.M. That’s when I take mine to ensure a pain free sleep.

[Mstiles in reply to Daylily2000]

In the morning since the beginning.

Maybe I’ll try mornings if I keep on having interrupted sleep. It’s getting a bit better since tapering.

Thanks

[PMRpro Ambassador]

"This nurse was more thorough, knowledgeable about GCA, and concerned than any medical professional I’ve had on this whole journey. "

Nurses often have a far more realistic view of things - and have probably listened to more patients than the doctors! This rheumy doesn't listen does she...

Have you mentioned the tinnitus to her? Ear problems can also be a symptom of GCA.

Why not try 2.5mg drops - that comes into the 10% range. But at present I agree with the others, no more reduction whatever she says until you and son both feel rather better.

Like others I have managed with elderly specs for years - I move them up and down my nose to find this day's optimum...

[Mstiles in reply to PMRpro]

Ha ha, the eyeglasses shuffle, me too. No point in getting new glasses until things settle down

haven’t mentioned the tinnitus but I’ll put it on my list for visit next week. Meanwhile I’ll stay on 25 mg until then. My son has about 10 more days of being off his feet on crutches

It helped to rant, thanks for listening and your response PMRpro.

[karools16]

Am sending you a BIG hug and a shoulder to cry on. Nasty Rheumy!

[Mstiles in reply to karools16]

💕❤️