My esr is now very low (9) and I have reduced to 2.5 prednisone. All over pain has resumed, Anyone else have this experience?

[honeyadams]

I was diagnosed in April, 2013, after an acute episode. esr was 90. 40 mgs of pred quickly stopped the pain. I feel like I have a mild case compared to what I read here. Have reduced pred and have been on 2.5 for the last 3 weeks. This whole 3 weeks I have had the pain return, although not acute, but nagging enough that I cannot go about my normal life. Tylenol does not reduce it much, but a couple of glasses of wine have more effect. I surely do not want to become an alcoholic from this self medicating, but long term effects of pred scare me. What do you think?

[polkadotcom]

Getting from 40mg of pred to 2.5 in two months is a miracle. I've not come across such a fast reduction before and would suggest that this may be the problem. If it is, then putting up the pred dose may be the only answer.

Paracetamol (Tylenol) has never had any effect on any kind of pain for me - I might just as well have a teaspoon of tap water. The side effects of pred are many, but having unchecked inflammation raging round your body can lead to other nasty things in itself. I preferred to safeguard my eyesight anyway, and take the pred.

I've been on pred for more than 11 years now and while I have had many ups and downs along the road, having seen and felt the effects of untreated PMR and GCA, I'm glad it's the road I took.

[Celtic PMRGCAuk volunteer]

Well honeyadams if you really meant April 2013 then I echo what polkadot has already said above. As you have had a recurrence of the pain for the last 3 weeks and had raised ESR at diagnosis then it would be wise to get those blood tests repeated if that hasn't already been done. If the results are high again, then if I were you I would get straight back on to a sufficient dose of steroid that controls the pain - uncontrolled inflammation lurking in your body can lead to many other nasties, not to mention the PMR-linked condition GCA which carries a risk to your eyesight.

[honeyadams]

The 9 esr is the current one. So my internist believes I should not be having pmr pain & that the current pain is just normal for my age (66). But I know that 4 months ago I did not have all-over pain every day & night. He did also say that my recovery was very rapid. I had very little pain during this whole reduction time. I guess maybe now I have become one of the people who have pain but no raised esr. My vitamin D levels are good & I am not on omeprazole, which can also cause this kind of pain. I feel like a sissy because most of you dear folks on the site seem to be having a much harder time. Does it sound like I should go back up to 5 mg pred or that I need to take a bigger dose for a little while again? I seemed to be ok at 5 mg.

[masonc3 in reply to honeyadams]

Unlike most blood tests, ESR has a wide range of values among healthy persons, ranging from 1 to 30, mostly below 8. See the Norwegian data for 3000 healthy persons:

Many doctors are not aware of these numbers and use obsolete data.

If YOUR healthy, "normal" ESR is 2, then 9 shows you have an inflammation of some kind. perhaps PMR or GCA.

Disregard "normal." Keep a record of your own numbers. The lowest you ever

see is a hint of YOUR healthy "normal."

[polkadotcom]

I don't think any medical person should brush off this kind of pain as 'normal' for any age!

Any of them trying that on me would be 'brushed off' a bit smart.

Are you on statins and have your thyroid levels been checked? I am one of those whose inflammation levels are never raised, but it's presence has been both seen and felt.

[honeyadams]

I am not on statins. I have had thyroid, blood sugar, chloresterol, etc. tested.

My internist did not brush off the acute pmr episode and is sure I have it. He seems to be trying to figure out if the current pain, which was milder when I saw him 2 weeks ago, could be something else. I have an appt for Monday, so maybe he was waiting to see if the pain increased. Just guessing here. I did not expect a bounce back. Probably denial on my part since the recovery had been pretty easy & fast.

[Loco99]

Hello honeyadams, Although I did not recover as rapidly as you, I am in a similar position, normal esr, and hovering between 2 and 4mgs of steroids. I managed to get down to 2mg for quite some time but this week I had a flare up and am back to 4mg. My rheumatologist would prefer me to be on 2mg but has said that if I am on 4mg it is not the end of the world. He will let me adjust my own dose to suit the circumstances. I think that some of us on a lower dose are 'on the edge' and not as well protected from the pain as when we were on a higher dose. It's all a matter of trial and error to find the lowest dose you can manage on. I hope you feel better soon.

[raymck]

Hi, Just been discharged from eye hospital care back to GP after 18 months positive GCA and loss of sight in 1 eye. 80mg down to 1 on that time but more or less constant side-effects of Pred throughout. These were many and various but pain is the least of them in my case! Of course it's there pretty well all the time but I try to ignore it and dont want to confuse things by taking painkillers on top of the 9 pills prescribed for hypertension, skin and scalp rash, etc. My GP is watching the ESR stay constant at my normal 13 now, but it has been up above 20 earlier. Consultant gave permission to stop the Pred after 1 month, so am hoping to be pred-free when I do my 3-City tour of Germany with a concert band in August! Pray it works out OK and try to ignore that pain if you can! raymck

[Pipistrelle]

Agree with previous posts. This is the wrong treatment approach and if you have PMR even the very best cases need at least 4-6 months of predinsone. Starting at 40mg is also 2-3 TIMES the recommended starting dose for managing PMR (!!!) -- 40mg would never be advised unless GCA is suspected.

I had by any measure a fairly 'mild' version of PMR -- debilitating but not as excruciating as most report -- and it took me just under two years to go from 15mg to 0.

I would get a rheumatologist to advise. The internist does not seem to know much about PMR or the proper treatment approach -- and is wrong that at 9 ESR you should have no pain; they should know ESR is not very reliable as an indicator of inflammation with this condition (I had PMR pain for a long time, as well as badly inflamed knees for a period, with my ESR at that level).

I do not know of anyone who has had only a 4 month run of PMR. I know of one man who treated it for 6 months, had a relapse a while later and was back on preds for 4 months. But men tend to be the ones who get milder cases.

I'd not drink much wine if you are on any painkillers as the combination can cause severe stomach upset and internal bleeding over time or even after just one incident. I was very sick and brining up blood from combining ibuprofen, a little wine and some coffee without much food one day and learned my lesson -- and now have to be very careful on NSAIDS.

Hope you can get a good idea of what you have and how to treat it successfully as you should not have pain at this level.

[jinasc]

ESR and CRP are GUIDELINES AND GUIDELINES ONLY. They can be raised for other illnesses, they are a sign that 'something is going on'. Clinical Symptoms are more important.

In some people, ESR and/or CRP are never raised. And if previously you have never had an occasion to check either of them. How do you know what is 'Normal' for you.

Any medical person, who can say "pain is normal for your age" should be dropped like a hot piece of coal, they are not fit for purpose.

[honeyadams]

Thanks so much for all of your input. I really appreciate it. Because my 1st episode was so excruciating he put me on that 2 week downward progression of 3 days at 40, 3 at 30, 3 at 20 & then I stayed at 10 for a month. That took the esr from 90 down to 9, taking monthy bloodwork. Sounds like what may be workable for me to do is go back to 5mg for a few weeks and see how that does. I don't know if we have 4 mg tablets in the US.

It is great to have this site and all of you to learn personal experiences. Reading all the research just gets repetitive and does not say how it really goes.

[sara4]

Honeyadams, I so agree with your statement that medical sites and research do not tell you what it is really like to live with pmr/gca. I was commenced on 40mg pred when diagnosed with acute gca symptoms, on reducing the steroids I became aware of pmr symptoms as well and after two years I am now taking 2mg pred a day, but have increasing stiffness and hip/thigh pain. I had a blood test which showed 19 esr, which seems OK for me so am trying to stick with the reductions but just am starting to feel like a frail old lady (59yrs) which is not right but desperate not to increase....it is such a dilemma and nowadays doctors like the patient to take the initiative on what to do. However, at only 4 months on pred it would be perfectly safe for you to increase for a while. Don't put up with pain so early in your pmr journey.

[honeyadams]

Thanks so much for your encouragement. I will talk to my doctor about it on Monday. I guess I would say the same to you, "Don't put up with debilitating pain when you are so young."

[Polywotsit PMRGCAuk team member]

Hi Honey, I have heard some stories in my time with PMR and GCA, I can tell you, and it takes a lot to shock me. But your story has shocked me. Either your doctor hasn't read the standard medical guidelines on these illnesses, or s/he has reason to believe that the original diagnosis was mistaken and is trying to get you off for that reason. Sounds like a second opinion is called for!

[steph1]

my ESR went from 35 to 2 now its up to 49 and for the thrid time my blood test has been positive for Anti Nuclar factor

Steph

[Whittlesey]

Hi Steph1, just reading your post. Could you tell me what the anti nuclar factor is? I have been reading lately quite a bit about GCA and part of my initial diagnosis included this information: "focal lymphocytic and giant cell inflammatory infiltrates" from the biopsy taken for GCA. Trying to understand what "infiltrates" refers to. Have heard about the anti nuclear factor. Could you explain what this is and what it means? Thanks. wishing you health, all my best, Whittlesey U.S.