Update and questions!

[catdance]

Good Morning Everyone! Well it's about 11 am here. I've already been out for a morning walk but didn't get to far! I have been trying to taper from 12.5mg to 11mg but getting towards the end of the 12.5mg to a complete switch over to the 11mg, I had been feeling ok, no pain, no more fatigue than usual but now I have been feeling tired most of the day, I have all I can do to get or have the energy to do something, unload the dishwasher, fold my laundry & put away. There is more pain in my neck, shoulders and upper back, hips and lower back as well. When I go for walk, I can't go very far or for very long even if I avoid the hills. My legs feel sore and heavy like I'm walking through water. I can't sit at the computer for long wihtout my back neck and shoulders hurting. I get up and walk around or try to do something and I feel I need to sit back down again after 10mminutes or less. I am taking 2 to 3 naps a day now. Is this normal or should I repeat the taper and maybe go to 11.5/12mg instead of 11mg?

I do have a call in to my rheumy and I did tell her about the stress going on with my kids health. Update on that: Oldest daughter, husband has completed treatments about 2 weeks ago for the throat cancer and seems to be doing well and getting hoarse voice back. Youngest daughter, found she had a heart attack and is awaiting further testing. Oldest son, does not have a brain tumor. Finding medication he is taking is working. It's probaby stress and anxiety. Youngest son, with pregnant wife and 2 1/2 yr old does not have Covid. So some of what I have been experiencing is probably due to stress too? Thanks for letting me vent! I'm waiting to hear back from my Rheumy on what she has to say but would appreciate any input. Feeling a bit better today but still bummed because this also feels like a huge step backwards!

[PMRpro Ambassador]

I think if you were honest - it is all a bit much for you and the change in dose has caught up with you. I'd go back and try just 1/2mg reduction. It may sound slow - it isn't slow when it works!

[catdance in reply to PMRpro]

Thank you! I think you are right about being a bit much. I had to fight back the tears when I told the nurse about all the stuff going on with the kids.

I'm wondering if the backache is part of PMR or is that something else? It does primarily seem to be in the upper shoulders and lower back between the hips but it does creep up above the waist to the middle as the day wears on.

[PMRpro Ambassador in reply to catdance]

Sounds like what I have - spasmed muscles due to myofascial pain syndrome. It can happen in its own right but is more common in patients with PMR. It is caused by the same inflammatory substances but they are localised in the muscle fascia (the transparent skin covering large musle that you will be familiar with from joints of meat and poultry) and in trigger points, knots of inflamed and hardened muscle fibres you can feel in the muscles.

[Grammy80]

You have had those types of deep stress that we just cannot help....we worry, we project and everyone such a serious concern. As Pro said, slowing the reduction will help. You are going through a great deal mentally and dropping by 1.5 is a lot. Give yourself a break...and a hug.💕

[SheffieldJane]

It really sounds like you are fire fighting with stress at the moment. A body can only take so much. Even 12.5 may not be enough, your symptoms are flare-like and building. I would stop the taper and see if your symptoms settle. You’ve had too many shocks, PMR seems to feed off this. Just pause until this period passes and things begin to resolve. Then a gentle, slow taper of half a mg every 3-4 weeks may do it.

[Sharitone]

Here's hoping you're on the mend now, after all that stress.Personally, once I've got below 15mg, I've always had to decrease by no more than 1mg at a time, even 1/2mg.

[catdance]

Thank you everyone! I have also been waiting to find out the results of the CRP blood test that was taken on July 18 along with the ESR and CBC. Come to find out they didn't take it! I wonder what they did with all my blood? Now waiting to hear from Rheumy if she wants to have it done. The ESR was in the norm but raised from14 to 16. I would think if you're checking one, you should check the other? I'm not sure why she had the CBC done? The results on that was raised slightly from before but again told me that could be from being on the pred. I went back to the 12.5 mg which does feel better, tonight will be day 3. I was thinking I'd stay on it for 5 days, see how I feel and then only drop to 12 mg & pick up the taper again?

Also, wondering PMRpro, what you do for the myofacial pain syndrom? Tylenol or will pred take care of it?

[PMRpro Ambassador in reply to catdance]

I get a range of treatments here - or at least I did before Covid! I find physio and massage therapy where they do manual mobilisation of the trigger points and tight muscles very good but my rheumy also does something called neural therapy which is a subcutaneous needling technique which stimulates the underlying muscles to relax and effectively heal themselves. Pred inections into the trigger points is useful - but oral pred tends to need too high a dose to be used much.

Have you had ESR and CRP done in the past? Do they reflect your symptoms? Some experts think ESR is more use than CRP - of course others disagree. But regular testing does establish how they reflect YOUR PMR

[catdance in reply to PMRpro]

Yes on the ESR went from 14 on 6-15-22 to 16 on 7-18-22. Still within normal range. CRP was 12.3 0n 6-15-22, not sure why that wasn't done on 7-18? I was told it all looked good so go ahead with the taper. I did but was having pain and stiffness. I'm waiting to find out if my Rheumy wants to have the CRP ran. I think it should be since it was high. (She called it slightly elevated.) Guess I'll find out Monday!

I've been thinking a message sounds really good! Or even a soak in a warm tub filled with epsom salts! I've also been getting cramps, some in weird places, back, hands, upper arm, jaw if I clench my teeth. I had my electrolytes checked and all was good there too. So I'm drinking more water and even adding the kind with electrolytes in it, once in a while. I'm not sure if any of what you mentioned would be covered by my health insurance. So far I've been able to get things to settle down if I lay down, rest or walk around and stretch. It does seem to be better on the 12.5 mg though.

[DorsetLady PMRGCAuk volunteer in reply to catdance]

ESR might be in normal range, but it’s rising - which is the most important thing to consider. CRP is higher than normal, and if that has risen again then that’s a concern as well.

But more importantly when tapering (which unfortunately some doctors don’t see to take into account) is the absence of symptoms….

[catdance in reply to DorsetLady]

Unfortunately I won't know until Monday if she'll order the test and if she does, it will be another week before I have an answer. Then there's her "deadline" for getting to 7.5 mg still looming over my head! I think I'm just going to stick with my symptoms and try to taper again in a few days at 1/2 mg at a time & see how that goes.

[DorsetLady PMRGCAuk volunteer in reply to catdance]

Think you have to stick to your guns, and explain to doctor that you are finding it difficult to stick to her “deadline”. Not because you don’t want to, but because the stress you are under personally and the effect that is having on your illness.

[catdance in reply to DorsetLady]

Yes, thank you! That is a great way to put it too! IF you don't mind I might just have to quote you on that. Plus her deadline is causing me stress.

[DorsetLady PMRGCAuk volunteer in reply to catdance]

Please do..and of course her pressure isn’t helping. Good luck. 🌸

[PMRpro Ambassador in reply to catdance]

She may have a deadline - but has she told the PMR? Did it listen and say it would comply? She isn't calling the shots - the underlying autoimmune cause of the PMR symptom is. and nothing she can do will alter that.

[catdance in reply to PMRpro]

I love how you put that too! You ladies sure know exactly what to say and straight to the point. It made me giggle just a bit. I just hope she's not going to try to get me to take something else on top of pred. Like MTX or something. I just don't think I've been on the pred long enough and if she hadn't tried to taper me so quickly & if the vaccine hadn't made me relapse, I might have been done with it by now! I think I just need a bit more time & a bit slower taper than planned.

[DorsetLady PMRGCAuk volunteer in reply to catdance]

Comments all true! ..apart from the “I might have been done with it by now!”😉

[PMRpro Ambassador in reply to catdance]

Given the family stresses I would refuse to start on a new drug that isn't proven to make a difference - to be fair, for a small proportion of patients it works brilliantly but they are the exception. And it can have quite severe side effects - within a month I could barely put one foot in front of the other and I felt awful. I couldn't have functioned as a carer - and you have far more to cope with than I did. And all the rheumy department here accepts that stress really affects PMR badly.

[catdance in reply to PMRpro]

I didn't realize those drugs hadn't been proven yet! Wow! That's crazy! So basically she's pushing to experiment?

[PMRpro Ambassador in reply to catdance]

Try magnesium supplements for the cramps. They often don't check the magnesium but it isn't very meaningful until you are desperately depleted - the blood scavenges from the muscles so they can be low and the blood fine. Here if you complain about cramp the GP will first ask if you have tried magnesium - on the shelf in every supermarket!

Symptoms reign - but checking the bloods for a rising trend will often provide some warning. Whatever the lowest you get to on pred is what you need to aim for, if it goes up from there, it is bad news.

[catdance in reply to PMRpro]

Thank you for that info. I did have the magnesium checked as well and all looked good but I'm still doing the supplements for magnesium, potasium, calcium & zinc. I found I wasn't taking the "recommended dose" of magnesium so I upped it and promptly had a 'bout of diarrhea so backed off back to what I was taking and doubled up on the potassium and that worked for a couple of weeks. Now I've been getting them again. I think it's because I haven't been drinking as much water?

[PMRpro Ambassador in reply to catdance]

Different sorts of magnesium have different gut effects - I can't use the supplement I can get free on prescription here but the expensive liquid on I can buy at the chemist is amazing! I need itfor arrythmia so now and again need raher more!

[catdance in reply to PMRpro]

I was wondering about that, although the one I am using is a reputable supplement. I wonder if I speak with the pharmacist about it if he might have a suggestion?

[PMRpro Ambassador in reply to catdance]

It is the type of salt that makes the difference - most are magnesium chloride or sulphate as in Epsom salts, Mag glycinate is said to be the gentlest on the gut. I use mag pidolate - which is favoured in France and Italy but not available in the UK. Mag citrate is absorbed well. You pays your money and takes your choice!

As for no blood tests to a year and a half - pffft ...

[catdance in reply to PMRpro]

The one I have been taking is a complex of Magnesium Oxide, Mag Citrate & Mag Amino Acid Chelate. It also has Calcium Carbonate, Cal Hydroxide, Cal Citrate and Cal Amino Acid Chelate, Zinc Amino Acid Chelate & Glutamic Acid HCI. Dose is supposed to be 4 caps/day. I take only one cap. So I only see one of those you listed......Hhhmmmm.

As far as the blood tests go, I have a feeling I will be getting my blood tested regularly from now on. I'm going to insist before taking to big of a step tapering,especially if she insists on a deadline.

[PMRpro Ambassador in reply to catdance]

I think you might be better trying one thing at a time - like just magnesium something and see how you get on. Once you have found one that agrees with you you can add the other things in and know which is doing what.

[catdance in reply to PMRpro]

Next time I head to the pharmacy I will ask about it. I'm not sure I need the calcium because I am taking a separate calcium tab, along with vit d3 and the zinc is a very small amount. My calcium level was on the high end of the normal range.

[PMRpro Ambassador in reply to catdance]

In that case - be very careful about the total amount of calcium. Even with just the prescribed supplements you are at quite a high level if your diet has plenty too. Your body can only absorb about 500mg at a time, the rest just gets passed out of the body so 2x 600mg tablets is more than enough. It is too much calcium that can lead to sludge and grit forming in the gallbladder or kidneys/bladder which eventually can form stones - not nice and rather painful!

Whatever the supplement, it isn't a case of if a bit is good, more is better. Many things can cause problems in excess.

[catdance in reply to PMRpro]

Sorry for not answering sooner. I checked into the calcium I am taking to be sure I'm not taking too much. The one with the complex is a capsule, it is 1000mg per serving, a serving is 4 caps and I'm only taking 1, so 1/4th would be 250 mg. The other tablet I am taking has Vit D3 with 90mg of calcium. I think I'm safe there? The cramps have settled down too. I really just think I wasn't getting enough water. I'll still have that talk with the pharmacist about the magnesium though.

I finally heard from the Rheumy's nurse on Tuesday. She said the Dr didn't need any more blood tests, so no CRP this time. She said nothing about the dose I was at or tapering. I'm not sure why no blood test. The results I've had so far indicate, as you said, that things are on the rise so, I'm sticking to the 12.5 mg for now. I'll try again Sunday which will be 10 days at 12.5 mg, but I'm only doing a .5 mg or 1 mg drop this time. I'm going to take it slow and hopefully I can get the blood tests done at a later date once I'm successful with the next taper. By the way, I felt like dancing yesterday morning! First time in quite awhile. I want to add that to my routine maybe bi-weekly as an alternative to walking when it's raining. I haven't tried the elliptical yet, I'd like to before winter.

[catdance in reply to PMRpro]

I wasn't checked right after the initial dose it was over a year and a half apart and I had to ask for it.