PMR return after 7 yrs

Thanks for your thoughts.  The reasons I feel fairly confident of the 1st diagnosis is I had the complete checklist of symptoms, albeit the area of pain., anemia, weight loss, low grade fever, loss of appetite, etc.  Also, the Dr did a battery of tests, (in fact they found a Thyroid mass, and kidney stones during exams) she was so thorough. As for the GCA, the surgeon was a well respected one and I don't have a reason to think that he wouldn't know what needed to be done. And as the only symptom that even pointed to GCA was the jaw pain, I had no headaches, tender scalp etc.....   so who knows?

I know now that I probably came off the medication too soon. Didn't realize that until I did some research just recently.  I had moved from New York to Michigan when my husband got transferred and had to see a new doctor, it was he that weaned me off the prednisone.

Although I realize that PMR can return, I was pretty surprised because it's been so long.  But as you say there really isn't a "cure".

While I don't want anything to be wrong with me, I'm hoping it's the devil I know, rather than the devil I don't. 

Thanks again...

I do know of people who had 7 or 8 years between episodes and one I'm sure was well over 10.

I mentioned poor surgical technique only as one reason - even the best surgeon in the world won't find evidence when skip lesions are there or the GCA is not even in the temporal artery. With jaw pain I'd expect it to be present lower down. You might find this interesting:

https://academic.oup.com/rheumatology/article/56/4/506/2631560

I had a positive right temporal artery biopsy which confirmed GCA but was also told, if it had turned out negative, another biopsy would have been carried out. Eileen describes the reasons why this is important.

 

Puzzling.  If you are being treated with prednisone that should wipe out traces of the giant cells after a relatively short time so I'd have thought a second biopsy would be even less useful than the first. 

The benefit of a positive biopsy is that it's a definitive diagnosis.  No one can say a few months later that you never had GCA.  But a negative biopsy doesn't mean that you don't have GCA.  

There is a study somewhere that showed that doing a second biopsy later didn't improve the results. Often they do both sides at once - which also seems a bit OTT given that only about 40% of TABs are positive anyway, even in patients where the symptoms are strong enough to make pred advisable. 

Thanks for your response.

All my symptoms albeit the areas of pain were textbook, weight loss, anemia, fatigue, low grade fever.  If I had the same symptoms as the 1st time I guess I'd feel "better" about this.  I responded to the prednisone fast as well and felt great....until now. 

I'm finding that what you say is so very true.... "No two people are alike." 

Wishing you the best.

Not only are no two people alike - I get the decided impression that flares/relapses in the same person may be quite different. Others who have had PMR twice (with several years between in some cases) say it and I have had 4 major flares and the last 2 have been totally different from the first two. The only link has been a low back problem which seems to manifest a few months before the real flare happens and which can be managed if a different approach is used (physiotherapy with therapeutic massage and manual mobilisation of spasmed muscles). If that is done, I need far less pred to manage the flare itself. 

I beginning to find that out as well.  

In thinking about PMR and the inflammation it is known for it brought to mind something that I never thought of. Over the past 9 months I have had MOHS treatment 3 times for a squamous cell skin cancer in the exact same spot each time. I queried the doctor this last time about why it kept returning to the same area.  His answer was interesting. The first two times I had sutures to close the area.... he decided not to use sutures to close but to leave the wound open to heal. He explained that he believed the sutures may have caused an inflammation that resulted in "attracting" the cancer cells to reform. I'd be curious to know if this may have been the catalyst for the return of the PRM this time around.

Moving on, I have not thought about the use of physiotherapy as supplemental treatment but it makes sense. I will be asking my doctor about that as well.

Thanks

 

Physio in the sense of "exercises" is not always a good thing with PMR, it can lead to severe delayed onset muscle soreness which then takes a long time to resolve - mine is targeted manual mobilisation of the trigger spots in muscle groups and inflamed fascia associated with myofascial pain syndrome. It is caused by the same cytokines that underly PMR but instead of being systemic (all through the body) they are concentrated in inflamed and hardened muscle fibres or the fascia and are released during the physical therapy - which can make you feel as if you are flaring until you have washed them out of the body. I have a superb hospital physio but massage therapy is a recognised complementary approach here. In systems where they are a bit wishy about it a sports physio or massage therapist - like tennis players use - can work wonders for us too!

I too have been getting physio treatment, and the exercises given to me have been all about keeping my spine straight, dealing with severe back pain for a while, helping heal a rotator cuff injury (or two) that sort of thing.  I continue with exercises I've been doing for many years.  None of the exercises are arduous, and my current physiotherapist has always urged caution when I do them, not to continue if they are painful to perform.  She also does mobilisation, and has done a few other techniques in which I am passive, dry needling and low intensity light therapy etc.  With the exception of the light therapy, which is supposed to help reduce cytokine production, none of the physio has been specifically directed towards the PMR itself.  This is quite different from the kind of physio I got when working, when I got a repetitive stress injury and had to strengthen the affected muscles.

I was just looking at your post and saw that you also have hand and forearm pain. This has been a red herring to my rheumy as he thinks that if hands and wrists are involved, it can't be PMR, although I have all the other signs and symptoms, and we have been advised by Eileen that hand involvement can be part of PMR.

I've had PMR for 20 months and am down to 9/10mg Prednisone using the DSNS method, but my rheumy has added Hydroxychloroquine, which I'm undecided about regarding its effect. I find the painful hands restrict me with my daily activities, and its the hands that worsen as I reduce the Pred.

Good luck with your journey!

Which seems to me as good a reason as anything to not reduce...

I have had significant hand and forearm pain that preceded my diagnosis of PMR.

I had cervical spine surgery back in 2012 and the hand pain was diagnosed as a peripheral neuropathy or cervical radiculopathy secondary to the spinal cord damage I have. I have been on Neurontin (gabapentin) for it for many years with slight improvement. Now I wonder if it is related more to the PMR and not the spinal issues or if it is a combination of both. 

Regardless, I have had severe burning pain, cramps and weakness in both hands since 2012 so I don't doubt that PMR is a contributing factor.