Very High Sed Rste

[Aleish]

Last month, after over two years on prednisone, my sed rate was up to 130.

Today it’s 90. My pain has been unrelentless for weeks. I had to go up to 20 mgs of prednisone , from 5 . That was last month but I got down to 5

Mgs and now again she wants me to go to the 20 mgs and come down.

I’m so depressed and full of pain. I feel horrible all the time. I’m doing an anti inflammatory diet with a little cheating. I don’t use any grains. Chemical free too. I believe most of the GCA symptoms are gone and this is PMR and some fibromyalgia.

Do these high sed rates come from the disease as well as fighting infections?

Is it normal after two years for the vasculitis to do this? Is this what they call a flare? Could it be another disease that the blood work is not detecting?

Feeling hopeless.

[HeronNS]

Did you get relief at the 20 mg? And how did you come down again? It seems like only four weeks was too fast to find the sweet spot where pred continued to control the symptoms, obviously 5 mg is far too little just at the moment.

Assuming all the proper checks have been done for differential diagnoses (other conditions which have PMR as a symptom) then I suggest there may a problem with the dosage and tapering plans.

Just looking back at a couple of your earlier posts. Sounds like for the time being you have to find a level of pred which keeps your pain at bay and when ready taper extremely slowly. Have you been able to find a way to get to the John Hopkins clinic which was recommended to you?

[Hidden]

I agree with heronNs. You seem to be yo-yoing and missing the dose that's required...all thing bring equal re diagnosis. Before you even consider tapering you need some stability. Each time you go up there's probably a little chunk of inflammation started to be controlled and then you taper down beyond the required dose. You also need to ensure you are on the proper meds for fibromyalgia pain. I had a fibro flare a couple of months ago. I tried raising all my pain meds to max dose before it started to ease. That was the only way to determine it was fibro not PMR. There is some evidence that crp can be raised for CRP too.

mdedge.com/rheumatology/cli...

I am just into year 4 and on 6mg pred and a dmard. My CRP has only reduced in the past year.

[SheffieldJane]

I agree totally with Heron, Aleish. Dropping by 5 mgs at once won’t suit you. More like 1 mg a month for one day then 2 days and so on, and only when those symptoms settle. Perhaps your depression needs a separate remedy either antidepressants or a talking therapy.? It is bound to make pain feel worse and more hopeless. I am looking forward to the post that says, “ I have had a great week”. Keep us posted and take the good advice your friends give you on here.🍀

[Aleish in reply to SheffieldJane]

I do drop by 1 mg a month at the lower doses. When I was at the 130 sed rate, I was under 5 mgs prednisone that took me over two years to arrive at. Jumping up to 20 mgs prednisone was just to bring the high sed rate down and help relieve my pain snd was intended to be handled like a dosing pak. It was just to relieve my pain which may have all been caused from other infections. As soon as I was back down to a single digit of prednisone I was doing a slow drop.

I was really doing much better on the Actemra and if the dividiculitis didn’t hit over New Year I would still be on the Actemra. As I mentioned earlier we are going to add another biologic back which will be based on a psoriatic arthritis diagnoses that we were treating a number of years ago with Enbrel. Will be trying to get Stelara because it’s used for psoriatic arthritis and the Dublin study has shown promising results for my current diagnosis.

[SheffieldJane in reply to Aleish]

Everything crossed for you Aleish!

[powerwalk]

Oh I just want to wish you well. It's so disappointing to be up and down on your meds like that. You have a lot going on there. The experts will advise more re meds, etc. Most of us know the feeling of not knowing where to turn. I really hope better days come soon for you.

[PMRpro Ambassador]

Whatever it is - if it is part of your PMR/GCA you are plain and simple NOT ON ENOUGH PRED.

GCA commonly flares in the first 18 months to 2 years and the most common reason for that is reducing the pred dose to too low a level to manage the inflammation. Even a small amount left over will, like a dripping tap fills a bucket eventually however slow the drip rate, mount up and cause symptoms sooner or later.

You need to go back to 20mg - if that is enough - and then reduce SLOWLY. Not 5mg per week, possibly even as little as 1mg per month. That is the only way you can find the dose you need at the moment. GCA is done and dusted in 2 years, PMR is even less likely to be done and dusted in 2 years - the median duration of management with pred for PMR is 5.9 years. That's how long it can last - on average. Sometimes it is far longer.

If you were on Actemra before, then you had a false impression of the amount of pred you require - it will be well above that without it. The more you yoyo with the dose, the harder it is likely to become to get the inflammation under control next time round. And while the idea of using a dose pack to deal with inflammation sounds good it won't work if the actual activity of the underlying autoimmune disorder has ramped up. You won't be able to drop back to the previous dose - that was obviously not enough anyway.

Nor does it really matter how slowly you reduce - NOTHING wll sneak you past that dose that is what is required at the present moment. The slow reducing is to make it more comfortable and to identify that sweet spot more accurately - if you drop 5mg at a time then 10 may be fine, 5 not and the actual dose you need may be 9 or it may be 6. Drop 1 at a time and you will get it right and not be on a lot more than you need.

I think you will have to accept a higher dose of pred until you can start on the other biologic - and hope it works.

[Aleish in reply to PMRpro]

Hi PMRpro,

I know you are right on spot with my dosing.

I’m on 20 now and only 2 days and I am much better.

I guess I will have to get out my bigger pants.

I’m so good on my diet but the prednisone does not care.

Thanks for the input.

My doc really hated to raise me but knew we had no choice. She put in fir the new biologic through my psoriatic arthritis and we will hopefully be awarded it.

I used to be in sales and they had an expression. If you can’t get in the front door knock on the back door. I was not going to homes for my work but it was a good tool to know for life.

🎈A

[PMRpro Ambassador in reply to Aleish]

Are you cutting carbs? Some of us need to be harder on ourselves than others. But no-one ever said life was fair ...

[Aleish in reply to PMRpro]

I do as much of Amy Myers very strict diet, as I can. No grains, no sugars, almost no dairy,almost no red meat. I’m not able to eat the paleo breads because I’m a universal reactor. I cheat with plain yogurt and organic apple sauce. If I want candy and I need something it will be a few dates or figs. I’m 5 ft 3 inches and weighed 105 when started prednisone. Now I’m 120 in 2 1/2 years. I like to be fashionably thin and love clothes, hair and makeup. This disease does not fit into my clothes. I was very ill before diagnosed and not medicated but at 73 then, I was looking early 60s. I can’t believe the damage the drug has done to me. Let’s not even talk about my bones which I took daily Forteo shots. All I did was stay at the density I started the shots. Bad osteoporosis. I also have untreated Hasimotos. These docs never tell me to go treat it, but I will shortly see about it. My depression is awful. Nothing works on me because of the thyroid. Probably more issues but I think this is enough for now.

[PMRpro Ambassador in reply to Aleish]

"I like to be fashionably thin and love clothes, hair and makeup. This disease does not fit into my clothes"

I think to be honest you should consider this another way: at 105lbs your BMI was under 19, it is currently just over 21. Both are very low and in some situations could be considered unhealthy. Many of us were normal BMIs pre-PMR and PMR and/or pred took us to obesity levels. We don't fit in our clothes either. But we have had to learn to live with it - acceptance that we are where we are makes life with PMR much more bearable.

[SheffieldJane]

If you have untreated hypothyroidism, that alone will cause depression. I am on Levothyroxine for life due to Graves Disease.PMR hasn’t aged me ( I think) though. I am plumper but I think I look younger.

[Aleish in reply to SheffieldJane]

Up here at 6 AM and full of the usual all over body pain and headache. I did ask this doc if I needed to see about getting medication for my thyroid and he said not yet. It seems to me that it should have an endocrinologist take a look.

0.0-0,9 is normal and I’m at 25.5 Thyroidglobulin test.

Thank you.

[PMRpro Ambassador in reply to Aleish]

Are you hyper or hypothyroid? He is aware that pred suppresses TSH?

[SheffieldJane]

I would see an Endocrinologist if I were you. I cannot interpret your numbers. It’s a long time since I paid attention to mine.

The depression I talked about seemed to stem from an under- active thyroid function. When I was over active, I experienced palpitations and restlessness, hunger and weight loss. I also got the protruding eyes of exopthalmic goitre ( normal now, thankfully).I seem to get diseases that make me beautiful.

Are you a member of the Thyroid health unlocked forum? If you join that as well you’ll probably learn a great deal and find empathy.

I am sorry that you are full of pain. It sounds like you need help with that too.

[Aleish in reply to SheffieldJane]

It’s the fibromyalgia and leaky gut issues. Most food makes me hurt. When I fast I’m much better but obviously I need to eat. 37 years of fibromyalgia.

[SheffieldJane in reply to Aleish]

Yet you are on such a controlled diet. It’s so unfair.

[Aleish in reply to SheffieldJane]

It’s nuts. If I eat a healthy lamb chop I get pain. I don’t use grains but actually a home made bread from organic wheat gives me no pain but blows my face up and gluten is just not good for autoimmune. It seems all the replacement stuff gives me pain.

Only thing that I don’t have a problem with is fish and most veggies. Potatoes are bad. The chicken cannot be fed any grain because I feel it. I’m like the canary in the mine. We have docs that do many protocols for my problems but these are not covered by my Insurance. Things like IV drips with vitamins and ozone therapy, just to mention 2 out of many. One needs to rob a bank to pay the very high fees for these treatments. I believe people are getting rid of their Lyme or autoimmune diseases with a good functional medicine center but I don’t have the money. Then again I met a woman with Lyme that claims they spent over a million dollars in 20 years and cannot recover from her Lyme.

I’m very tired of being sick and I will admit the only thing that keeps me here is my son and his two babies. So I will be continuing my quest for health as long as I can.

I did register on the thyroid site but have not posted yet. Guess I need to get to it.

Thank you for your wonderful input.💕

[SheffieldJane]

Thanks Aleish. I am glad you’ve got your son and his two babies, that makes all the difference in the world. I think I need to pay more attention to the impact of various foods. I just get fed up of being so vigilant. I am definitely bloated and out of sorts today. X