Undifferentiated Inflammatory Arthritis (UIA)

Another excellent post.  I understand all that you said.

I have to admit that one of my worries is that there's a cancer in the background that's causing all this.  But my brain tells me that the longer I "last" without a cancer rearing its ugly head, the less likely there's a cancer lurking in the background.

Is cancer associated with polymyalgia rheumatica?

A cohort study in the General Practice

Research Database

Sara Muller, Samantha L Hider, John Belcher, Toby Helliwell, Christian D Mallen

does suggest we should be more closely monitored for a year or so. I don't know if your medical technical language is up to reading it but the conclusion fits what you say - the longer I have had PMR with no cancer diagnosis the less likely it becomes!

The figures in this paper show an increase in dx's of cancers in the first 6 months after developing PMR but a return to pretty much the same as others thereafter. The obvious conclusion there is that there were mis-diagnoses at the time. There are cancers that become more likely later - colon cancer is one and some of the associated cancers they mention would be picked up by blood tests. And the fact remains that once we have one autoimmune disorder we are more at risk of developing another. Plus, taking pred does help reduce the risk of some of the cancers that develop as a result of long term systemic (all over the body) inflammation. Pred may be not nice - but it isn't all bad.

 We've had exchanges before but now I have a question - I have my Rheumy's advice, and knowing you aren't offering medical comments,. The question is whether , given what you and others know from experience, I should take a course of metotrexato ( the Spanish name) for three weeks , followed a day later by some folic acid pills, in the hope of being able thereafter to drop my intake of preds? 

I don't like the look of the list of possible side effects given the other meds I am on, beta blocker, blood thinner, heart beat regulator, etc.  Stuff  I had never heard of or thought were for true geriatrics- I'm a mere 73.5 and fairly fit, although for now I no longer think of marathons  at 90- 4-5 kms on a good  day is getting to be tops.

I had worked my way down, some seven months after the sudden onset of CGA to 11.25 mg of corticosteroids per day. Then for reasons unknown the symptoms of the truly ugly cousin PMR hit me. My ESR ( sedimentation rate) suddenly went from normal- 12 or so to almost ten times that between blood tests. I was quickly put on a new dose of 50 mg of pred, and have worked that down to 20mg per day. But that seems about as low as I can go before I encounter back , wrist and leg pains. Those are manageable with some accupressure and non blood thinning pain killers.

Not directly related , but I see there are some new and potentially relevant discoveries as regards antiviral treatments out of Oxford and Bristol universities. You are no doubt well informed. Also from the USA comes a report to the effect that many of the familiar PMR symptoms are also seen in a condition, not previously well explored called "adrenal deficiency". I suppose that can  be searched for on the net- I have a copy of the report, but it seems I can't post it, nor can I show a website on this service. The reason for mentioning it is that this problem appears to be not just treatable but curable. I wish CGA and PMR were as well. Maybe they will go away- let's hope.

Keep up the wonderful work.  And please comment, if you can't  entirely answer my question above. I plan to start the metrotrax injections in the next day or so, while maintaining the pred level for while until can meet my rheumy again..

Regards, Charles

ps: Is it possible to draft atext in for example Word  copy and transfer in to this blog? That would make its use much easier. C

Next, yes you CAN put in links but they will disappear until they have been checked out by the moderator - they are captured automatically when you write an internet address or also certain words trigger it. if they are OK the post will be returned once they have been checked.

Now you have got to 20mg - how are you reducing? I would hazard a guess that it was GCA that was returning if the sed rate shot up that far - and PMR symptoms are also a symptom of GCA but the prompt return to 50mg hit that hard. There was no need to go back to 50mg if the doc only thought it was PMR, so it suggests he thought it was GCA too. At those high doses 5mg reductions will be fine for most people. But no reduction should be more than 10% of the current dose and for many patients even that is too much. 10% at 20mg is 2mg - 5 would be WAY too much. 

There has been a lot of discussion about reduction on all the forums and 2 versions of a "dead slow and nearly stop" reduction plan are doing the rounds, many people have tried them, almost all successfully. One is being used by a consultant in the northeast of England - even he is impressed! I never got below 9mg without the symptoms you describe appearing - until I used the reduction plan you will find in posts 4 and 5 of this thread on this forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

If you are still on 20mg then the adrenal deficiency question shouldn't arise - the body makes the equivalent of about 7 or 8mg pred of a natural corticosteroid called cortisol. The body doesn't care whether it is natural or artificial, it is a corticosteroid, and there is plenty of it swilling around your body. 

I can't comment in detail about the USA report about adrenal insufficiency since I haven't seen it - but is it "real" science? Adrenal insufficiency can't be "cured" - and it is certainly something doctors are aware of. Some patients never get off pred because they need a low dose to compensate for poor adrenal function but it is usually a dose well below 10mg. What is actually not clear is whether it is the adrenal glands themselves or the complex feedback set-up that governs adrenals, thyroid and other organs in producing hormones. But adrenal function should be checked at low doses of pred if patients can't get off pred altogether. I don't think that applies for you yet.

The most recent comment is (finally) that mtx doesn't have a role to play in PMR - and has always been it has no role to play in GCA though there are many doctors who do believe it works. The studies done are inconclusive: one said it works, one said it didn't, one didn't know. It is certainly another set of side-effects to consider and they can be unpleasant. One big PMR/GCA cheese in the UK supported using mtx - but about 18 months ago was co-author of a paper on a research project where it stated quite categorically that mtx was not useful in PMR or GCA so that other approaches must be sought. Personally, I wish he'd say it rather more publicly.

I know 2 ladies who were initially able to reduce their pred dose only to have quite severe relapses, one going from PMR to GCA developing despite being on pred and mtx. It changes the way the body metabolises pred so that you may be able to manage on a lower dose which achieves the same effect. Or not. The mtx doesn't replace the pred - unless you really have late onset rheumatoid arthritis which can appear identical to PMR in the earlier stages. mtx is the first line approach for treating RA - for those patients, and there are quite a few, mtx will work better than pred. 

Before starting the mtx I would try reducing using the very slow approach I have given you the link to - that may achieve the desired result without the pain. I'll lay odds it is steroid withdrawal pain and the mtx won't change that. A very gradual reduction will.

Ciao, Charles

Charles

After the PMR was "diagnosed" (it's in quotes because it wasn't diagnosed as such - I asked if it could be???) a Hungarian colleague of my husband told me his wife had had something almost identical to me which was relieved by pred - but only at higher doses and she had unnacceptable side effects. He is a medical doctor although he does research rather than practising and together with the local rheumatologists they treated her with an antibiotic for a couple of years and it did the job. I suspect it was doxycycline but I haven't managed to get anyone interested in thinking about it. What I also know is that a few people have said they felt much better for a time after being on antibiotics for other problems. 

There have been a few clinical trials ongoing in recent years looking at the effect of minocycline and doxycycline in RA - they doesn't cure it but modify the joint damage. It also has an effect on protein synthesis in the mitochondria - I wonder if that has any role to play.

Small, red bumps will appear at the site of the tick bite. Theses small bumps are normal after a tick bite and doesn't indicate Lyme disease. Over the next few days, the redness may expand forming a rash in a bull's-eye pattern, with a red outer ring surrounding a clear area. For some people, this rash can appear at more than one place on their bodies. Fever, fatigue, body aches, chills and a headache may accompany the rash. It will seem like you have the flu.

Later Symptoms: The rash may spread to other parts of the body.  Several weeks to months after you've been infected, you may experience:

You may develop bouts of severe joint pain and swelling. Your knees are especially likely to be affected, but the pain can shift from one joint to another.

Weeks, months or years after you were infected, you may experience neurological problems such as inflammation of the membranes surrounding your brain (meningitis), temporary paralysis of one side of your face (Bell's palsy), numbness or weakness in your limbs, and impaired muscle movement. Less common symptoms: Weeks after infection, you may develop: Heart problems, such as an irregular heartbeat. Heart problems that may last more than a few days or weeks. Liver inflammation (hepatitis). Eye inflammation and Severe fatigue. Doesn't this all sound familiar? I had a test recently for Lyme Disease and it came back negative so doctor recommended repeating the test again in a month.  I have been bitten by ticks over my lifetime so this Lyme connection may be really something the doctors/researchers SHOULD look into. It is possible isn't it, that we fend off the initial symptoms (meybe when younger) and it lies dormant for years?  Something like Shingles???

Other tick borne diseases: Tularmia, Babesiosis, relapsing Fever.