Update on pred taper and added stress!

[catdance]

Hi everyone,

Thought I'd run this past you and update my status. It's been a rough few days. I felt so bad that I had to cancel plans for my oldest son's birthday this weekend. I just didn't have the energy to do anything!

I ended up having to go back to 15 mg. I was doing ok and by Thursday it was a week so tried going to 12.5 mg on Friday. Felt awful, neck, shoulders, hips and lower back stiff and sore and totally exhausted. I have since been resting all weekend plus. No real energy until yesterday, which made no sense since I got no sleep at all! I slept ok last night and feela bit better but my lower back hurts, thinking this is related to something else unrelated. Back to 15 mg since Sat. Thought I would try to continue the taper again but this time only drop 1 mg and planned to work towards 14 mg. I decided to call and ask my Rheumy about checking the markers to see if the inflamation is under control before trying to taper again. From what I could see in my records online, I've only had a blood test done once at the onset of the PMR. Apparently she agreed because she ordered the blood tests and suggested that I go to a taper plan of every other day for 2 weeks alternating 15 mg and 12.5 mg. Then stay on the 12.5 mg at which point she will check the markers again. So I think we're on the right track but feel I shouldn't drop to 12.5 mg just yet.

My unrelated issue with lower back pain has to do with HRT which I was told that I should quit and did so over the weekend only to have it make the issue worse and give me more pain with the lower back. I have gone back on them and have an appointment with my OB/GYN on Friday to discuss what's up and what to do now.

So with all that in mind, between what's going on with me and worrrying about my oldest son and his issue with blood pressure, I now have an added stress of finding out this morning that my youngest daughter was in the ER yesterday and has blood clots in her lungs and 2 in her legs! She was sent home with blood thinners and she has an apppointment this morning with her GP. Even though the hospital referred her to a pulmonologist that didn't have any notes to that effect, so she couldn't get an appointment with them. They also discovered that she has a section of her heart that is showing it is weak. I'm so worried about her but thankful that she is seeing a Dr in a few minutes.

[PMRpro Ambassador]

Why are you to quit the HRT? I had been on HRT for about 13 years and stopped after one too many scare stories (later disproven) and within months the PMR symptoms had started. That could parallel you feeling so much worse having stopped.

Low back pain alongside PMR is not unusual - something called myofascial pain syndrome is more common than usually seen. It irritates the muscles and nearby nerves and can lead to muscle spasms and it doesn't take much to tip it over the edge and really hurt. I've ended up on the ED twice! The Germans call it a witches' shot - knives going in and twisting comes to mind!!!

[catdance in reply to PMRpro]

Thank you PMRpro, good info to know! I was having bleed through here & there for about a month. Light but couldn't go without a liner. He suggested it was the steroids causing the issue and stopping should stop the bleed through altogether and but it didn't. The back ache reminds me of the typical period back ache that I used to get a young girl/women. Tylenol takes care of the pain so wasn't relating it to the PMR. I was experiencing twitches but those have sudsided as well.

[Thelmarina in reply to PMRpro]

That’s so interesting. Exactly what happened last night! I was thinking kidney stone and having to call the paramedics. When I got up and moved around the pain completely disappeared. Fingers crossed for tonight!

[Sharitone]

Keeping my fingers crossed for your daughter (and you)!🙏

[catdance in reply to Sharitone]

Thank you!

[SheffieldJane]

With your worries about your children and everything that is going on right now, I would be inclined to stop tapering and stick at 15 mgs until things settle ( run it past your doctor). PMR just feeds off stress. Furthermore, in my experience, alternating doses is not an effective way of tapering, especially with a 2.5mg difference in the doses. You just feel rotten on the low dose day. I would urge you to look at tapering programmes on FAQs and choose DorsetLady’s perhaps. It is really effective - but not while you’ve got the anxiety about your daughter’s health to deal with.

[catdance]

I agree with you on both. Thank you for confirming my thoughts. I'm pretty sure I have enough of the 5 mg to take 15 mg for at least another week or 2. I also have 1 & 2.5 mg tablets so I don't have to take such a big jump on the taper when I do. My original plan was to start the taper at 14 mg since 12.5 didn't work, and yes using one of the tapering plans. My Dr is fairly young so I'm sure she is influenced by the "old ways". I think it's good that she ok'd the blood test and wants to check it once I'm down to 12.5 mg. Tells me she might be a little more progressive. 😀 Update on my daughter; her GP thought the issues she is having are due to the Covid vaccine. She's back home on some medication and instructed to get up and walk around or do some yoga every couple of hours. IF she doesn't feel better and/or to watch for confusion, passing out, hitting her head, coughing up blood or chest pain she wants her to head to the ER. At a different hospital though. She doesn't like the one my daughter went to.

[PMRpro Ambassador in reply to catdance]

That happened with my daughter and her appendix! The Uni hospital couldn't recognise it - and the GP was insistent I go the other direction to the smaller hospital the same distance away who got it right!

[catdance]

Thankful there are Drs out there who do actually care. Just wish the other ones would get out of the profession!

[Nextoneplease]

Oh catdance, what a time you’ve been having! 😳

I agree with PMRpro about the HRT and hope you can get that sorted. I’d also agree with SheffieldJane about tapering. I know I had to hold back on this when my daughter was ill, I did try to reduce dose but honestly the stress made it very difficult.

I don’t have anything to add to previous posts but just wanted to wish you well. Hugs xx

[catdance in reply to Nextoneplease]

Yes I think the HRT played a part in how I felt and didn't want to add insult to injury, so to speak. I'm going to take it slow and wait to see what the results are on the blood tests before I do anything. Thank you so much for your hugs xx! It's so good and so appreciated to have the support from all of you!🤗

[PMRCanada]

Sorry to hear of all your struggles. It’s difficult to not worry about our children, regardless of their age, especially when they are having health issues.

Your rheumy’s directions remind me of my first rheumy, who instructed me to drop from 15mg down to 12.5. It was too big of a drop for me and I flared (bloodwork confirmed this). So I started dropping by 1mg down from 15mg and had no problems until I got stuck at 9mg. Once I got to 10mg I dropped my dose .5mg at a time.

I never did go back to that rheumy after 3 appointments as she was extremely unprofessional and accused me of lying and putting up my pred dose “without her permission” among other things.

Perhaps you could speak with her once more and request bloodwork now, rather than wait till you get down to 12.5mg….indeed you may not get to that level without the painful symptoms you are experiencing now. The results of current bloodwork combined with your symptoms may persuade her to agree with your idea to drop 1mg at a time.

Advocate for your health and quality of life. Keep us updated.

[Janstr]

It’s interesting that you had an increase in symptoms after stopping HRT. I used it for a few months a year or 2 post menopause, to reduce the likelihood of bone density loss as I had osteopenia at the time. I had had no menopause symptoms at all. Like PMR pro, I stopped taking it suddenly (without asking my GP) when the scare stories started, & then got the full whammy of menopause symptoms I hadn’t experienced before & thought I had escaped. I was subsequently told by my GP that I should have slowly reduced the dose rather than suddenly stopping it.

[PMRpro Ambassador in reply to Janstr]

I had discussed it with my doctor - they were probably more keen I should stop than I was. But I didn't have a return of menopause symptoms apart from fatigue - although I was still perimenopausal.