PMR with night flushes. Histamine?

Hi ptolemy. I certainly considered steroids but after reading of the side effects of long-term use I decided against them. My doctor agreed and said that if I could tolerate the pain and stiffness the condition would likely run its course in a few years and would resolve naturally. I'm hoping ...

I cannot believe a medical doctor saying that to you. They are supposed to look after your health. Your doctor is happy for you to have pain over the next few years when it is not necessary. What side effects are you worried about? If you look at the average side effects listed from medications a lot of them are pretty horrendous, even those bought over the counter. The chances are that you will not get many side effects if any, and you can probably ensure that they are kept to a minimum.

Well, he was more concerned that it might be something else mimicking PMR, so he ran quite a battery of blood tests. They were all negative. I think many physicians are reluctant to prescribe steroids and have seen numerous papers referring to steroid-sparing treatments (see the link I posted in my last message to EileenH). PMR is on the low end of a spectrum of similar autoimmune conditions. If I had symptoms of CGA or SLE, I'd take steroids without hesitation. It's a balance of benefit against risk.

Hi Eileen. My condition came on suddenly with a minor tooth infection, which spread into my jaw, throat and ear, then cranial inflammation and sensitivity. All of the above resolved after two weeks, but I was left with neck stiffness and pain that gradually moved into my hips, thighs and knees, then later back up into my shoulders and upper arms. There hasn't been any recurrence of arteritis, no headaches or sensitivity, but I will be going on prednisone if there is.

Isn't waiting for the evil day a bit late? I understand that it is possible to lose your sight within thirty hours if not treated immediately. Also why do you want to take a high dose of pred when you can take a small dose now and start living a normal life again?

ptolemy

I know two people, one who lost one eye whilst sitting in the hospital - the other lost one eye as told he had migraine, rushed into hospital on 100mg drip and sight saved.

EileenH has quoted the figures for that big ugly sister to come along - who runs the risk of loss of sight.

If it is any help to roger5655, depending on age and how long before diagnosis, the prognosis for remission for men is about 2 years and then remission. Women take much longer.

How someone can put up with a diminished oxygen to all your muscles and damage them by letting the inflammation have its own way is beyond me.

GCA patients experience more acute symptoms. They have muscle stiffness and pain, but also fever and night sweats, plus scalp sensitivity and headaches. If I begin to have these symptoms I will be into the clinic like a shot to get on prednisone.

I had GCA for 5 years and had no muscle stiffness or pain, no fever and no night sweats.

I did not have PMR.............

Now in 8th year of remission.

Roger listen to Lodger. It is like saying I will live a really bad life style until I get diabetes and then doing something about it, rather than thinking about it in advance.

What were your initial symptoms? Did you have tender scalp? I have to admit that reading articles and papers is a bit confusing because I see one author talking about PMR and CGA as if they were one in the same, and another making clear distinctions. Then in comes vasculitis and its variants, which gives me the impression the medical community is struggling not only with the cause of these conditions, but their classification.

Thanks, ptolemy. I'm impressed by the knowledge I've seen here and will reconsider my situation. But I'm also concerned that if I go on steroids I'll have trouble tapering off. I'll get to the point where I have to continue use and face the prospect of side-effects for life. As I mentioned, I'm at high risk for an aggressive form of prostate cancer, so that weighs heavily on my thinking.

I had prostate cancer and surgery. How do you know you are at risk for

"agressive" prostate cancer?

My brother had prostate surgery a couple of weeks ago, he was given three options as to what options he could take and he chose surgery.

Hi Roger, I am 81 year old ski instructor who had worked the while taking Prednisone, without I never could of done. Believe me I don't like Pred, but it has allowed me to live a normal live. Good luck, try to stay active, positive with a smile 🙂

Which in my book means you need to live life now.

On Thursday it is 25 years since my husband had his D-day at the age of 41. It was take this chemo/surgery/radiotherapy or die within a few weeks. Not one of them, all of them as it turned out. The long term effects are really surfacing now - but in the meantime we have had 25 years of a pretty good life. Had I refused pred, the last 10 would have been unbearable if the previous 5 were anything to go by.

How true, Eileen. There is no use in sitting down and waiting we just have to make the most of what we have. Like you, I decided we had to do all we could when we were able and continue to do so even if it is now at a slightly slower pace. My OH, as you know, has a life limiting illness plus other health issues but he has defied the black picture which was given to us 9 years ago. We have enjoyed some lovely holidays and time with friends and family. Medics don't always get it right. I realise that some people do find it difficult to cope and are bowed down by bad news. It's not always easy even for those of us who just carry on but life can be fulfilling.

My father, brother and uncle all had the aggressive type. I had my DNA tested which confirmed I have the mutation found in men with high incidence for this type of prostate cancer.

Hi Michdonn. Thanks for the encouragement. You must be doing great on pred.

Up to last October I lived an extremely active lifestyle and this hit me like a bolt out of the blue. I'm gradually increasing my activity level and find that moderate exercise is reducing symptoms, except for the problem sleeping. Some of the comments here, especially on CGA and vision loss, have concerned me and I am going back to my GP to discuss with him.

Understood and agree completely. I'm not waiting for remission, I'm just forging ahead and making the best of it.

Best wishes for a complete recovery to your brother, ptolemy. I discussed options with a prostate specialist a couple of months back. He is suggesting watch & wait, but if my PSA takes off I'll be going for surgery.

Roger, when I first came on the forum a couple years ago, I was 1 year into my PMR journey suffering a terrible flare, could not walk, had used a wheelchair. With the help and guidance of the forum I started walking again and riding my bicycle. Skied that winter 2017-18 and the organisation of ski in NM awarded me ski instructor of the in NM. My highest dosage was 30 after my flare currently on 4 tapering to 3.5 using DSNS. l had a lot of problems when on 30 mg of Prednisone, but feel normal on lower doses. I am a 81 year old long time diabetic. Good luck. believe stay active, positive with a smile. It helps!🙂

Thanks Michdonn. Your example and good wishes are very much appreciated. I'm realizing that I've been lucky, first to have avoided vision loss during the acute period when I had arteritis, and second to have retained mobility. I'm 69 and have a rural acreage in southern Manitoba. I thought the upkeep would be too much this summer, but it's turning out to be manageable. The important thing as you say is to stay positive and active. Good luck with your ski instruction.

there are many reasons that PSA can increase. Infection is one of the most common one. But I want to tell you that my PSA doubled initially when I was diagnosed with PMR. It was a reason that I got 3T MRI exam to make sure that prostate is not the reason for higher inflammation markers. As time goes by and PMR is becoming less active ( now I am at 2mg of pred), my PSA was also trending back to pre-PMR levels.

My PSA was 2.7, within 9 months it went to 3.6. Dr didn't want to do a biopsy until 4.0 or more. I forced the issue and got a biopsy, I had cancer. Watch the rate of rise in PSA, if .5 or more in 6 months get a biopsy.

While I agree that monitiring of PSA is esential, I disagree about biopsy as a first step. It is much better to get 3T MRI and see if there is any sign of cancer. If they find something suspicious, then guided biopsy is next logical step. Doing byopsy without knowing where the cancer might be is 'shot in the dark' at best. Taking 16 samples at random is what you get. If you accidentally get sample from the cancer area, then you can do analysis. BUT if you missed cancer are you will get diagnosis that there is no cancer, which may not be true.

You can not get a Gleason score of the cancer from a MRI.

Biopsy is the only way to get the stage of cancer.

PSA, digital recital exam, biopsy, lab, surgery, in that order then PSA test every 6 months for many years.

My test and Surgery came from John Hopkins Hospital. They wrote the book on Prostate Cancer.

All true, however biopsy without knowing IF you have cancer and WHERE the cancer resides is random sample of tissue . You are taking 12 or 16 or even 24 sample with a needles from total volume of your prostate, which in many cases is 70-100+ grams. It is easy to miss the cancer area if you don't know where to take sample from. This is why it is much more prudent to do MRI imaging to find out IF you have cancer at all and where to take samples from. Biopsy has its' function, but I certainly would not do it without MRI first. Besides considering that 10% results in nasty infection, why poke if unnecessary.

That's interesting. Thanks Nick. Could explain why my PSA started rising about the same time I came down with the infection that has triggered my PMR.

Thanks for the information. Mine was 2.0, then 2.3 after six months. The specialist noted bumps and enlargement in one lobe, said that hard bumps are bad, soft are OK. Mine were soft. So I'm scheduled for another test and exam in about 9 months. I will ask for an MRI if the trend continues. They told me they do the biopsy guided with ultrasound and I guess the MRI image gives them a target. They also said cancer only develops in certain areas of the prostate, which was news to me.

The main objective is trying to stop the cancer before it gets out of the prostate.

No - but the latest recommended approach is to do the MRI first and THEN do the guided biopsy. It often means you don't need the biopsy at all initially. If they do find cancer with the MRI, then you do the biopsy and it is far more meaningful. They do an MRI anyway - so why not do it first?

Thanks Roger, we have to hang in and keep moving forward, with a smile. 🙂

Put PMR- GCA- Northeast uk in your search engine and read the stories. The one with GCA is mine.

I do so worry when PMR people are not wanting to use pred...........it can, as Eileen has said lead to GCA.

GCA is the largest member of the Vasculitis family and they are all auto-immune illnesses............so they are all linked.............the problem is no-one knows how yet - but they will get there. There are over 800 orphan illnessess as well.

You will get off pred, once the PMR decides to take a hike..........you cannot make it go away, no-one can.

Follow the DSNS plan once you get down to 10mg................before 10% is the golden rule and not more than a month at a time.......................if after about 5 days following the drop you don't feel OK.......back up and wait a couple of weeks then try again.

You can do it..................and remember pred is the oldest and most powerful drug we have. Some children kids are on it for life -without it - you know the answer.

Because it is old they know all the side effects and I can assure no-one I know has ever had them all.

Good Luck on this journey not one of us ever wanted to undertake.

Thanks Lodger. My mother's family is from Co. Durham. Maybe we share some genes and a susceptibility to PMR. I'm scheduled with my GP next week and will discuss the CGA issue. In my case the scalp arteritis just resolved by itself and I haven't had any recurrence. Good luck with your journey and always be positive.