PMR and blood clots ?

Bones, joints and muscles
1

Will try to be brief.  I was diagnosed with PMR in late April - early May. I am 70.  Have struggled since that time, On the 16th of Nov, after an apt. in the doctor's office, I was sent to the ER where was diagnosed with a blood clot in the left leg, blood clots in the lungs, and micro blood clots in my body.   My meds are prednisone, methotrexate, and an added eliquis.  This has been tough. The meds are vying for the prize 'worst side effects.'

While in the hospital, I was told I have prednisone induced diabetes, too. Believe me, I'm watching my diet.

If you have had blood clots, please let me know your experience.  I've been told if I cannot take the blood thinners I'll have to have a filter.  My leg is still badly swollen. Today, the other leg is hurting, but I've been assured there are no worries as long as I'm on the eliquis.  However, I'm calling the doctor on Monday.

My big - very big mistake was not paying attention to my symptoms. I was blaming all my issues on the side effects of prednisone and that was not the case.  Ignoring symptoms nearly cost my life.  The ER doctor was shocked that I was in the ER, telling me most people with the problems I have don't make it there. *sigh*

I was hospitalized 3 days.  

There have been no explanations as to 'why' though they have thrown a few possibilities out to me.  

This disease is beating me up. My other immune diseases are Behcet's (in remission,) Hashimoto's, and Fibromyalgia (new). The prednisone is not helping the Fibro pain and I'm not taking one more pill. 

Thinking of you who are in this same boat.

MariGrace

 

2

Hi.MariGrace

There is a risk of preds causing venous thromboembolism. I came off preds 11 months ago. I was determined to get off them due to all the adverse side effects preds threw at me. I'd rather have the pain than the side effects..11 months on i am good and all side effects are gone!! I hope you do not stop the preds abruptly as you will get very ill and could get adrenal crisis if you have been taking them since May. You certainly don't want that on top of everything else you are dealing with..my sincere best wishes to you MariGrace for a speedy recovery...

3

Oh, I was on prednisone for years with Behcet's. I hate it and respect it.

It will be a slow go to reduce and I have been told all my meds are for life, now.

I don't want more meds for the new fibromyalgia.

The clot in my leg is a DVT, Pe's in lungs.

Thank you for your response.

MariGrace

4

Hi,

Thank you for your information. I have the swollen feet but I thought that it is the reason of my not activity. From about 6 months I stay in bed and walking to washroom and table with meal. To support my muscles in legs I use the Electronic Device called Revitive. It improves my circulation but I am not sure if enough. I will discuss with my doctor.

Good Luck

CW

5

CW, that is a good idea.  I hope you can get some relief, soon.

My swelling was from the toes to close to the knee - with the leg so large it was leaking fluid. When my doctor saw it, he sent me right to the hospital for a doppler in radiology, from there I went to the ER where they did the CT with contrast on the lungs.  There were no 'tell tale' signs of a clot in my leg.  No pain where the clot is located (behind my left knee), no redness, no knot like swelling.  It was/is strange.  

Another issue that I was so mistaken about was my breathing.  it was terrible during the day, but awful at night.  That is another sign of blood clots that I blamed on prednisone.  

We think the clots were there, before diagnosis, at least 4-6 weeks.  Not good!

Take care!

Lynn

6

MariGrace, sorry to hear of all your problems. A minor issue is the induced diabetes, a helper is chromium picolinate. I think it will help reducing your blood sugar levels increased by taking Prednisone. Good luck on your journey. Try to stay positive and smile. Smiling 🙂

7

First of all - are they SURE it is PMR and not the Behcets? I know people who were dx'd with PMR but it turned out to be Behcets and there are better medications for Behcets nowadays.

I don't know if it is any consolation but there are no medications that really help fibro unfortunately - despite what the pharma companies suggest.

How are you getting on with the anticoagulant? I've been on a new generation a/c for a couple of years now - absolutely no problems at all. Not even increased bruising.

8

Thank you, Eileen. Yes, 3 different doctors agree with PMR. They were going to do the GCA biopsy in the hospital, but increased my prednisone and that stopped the headache and temporal tenderness.

In the hospital, i was given shots in the belly that were thinning the blood. Now, Eliquis is my med and i do have dizziness, some bruising, and it has no stop remedy for sudden bleeding.

Neither of my specialists want me on Coumadin.

The doctors are collaborating, that is postive. They have checked for other immune diseases and are working on

Blood disorders, now.

Behcets was an issue from early childhood and diagnosed when i was 40 by NIH. My rheumatologist said multiple immune disorders morph.

They are doing so much blood work and watching for lupus, for lymphoma, for... ??

It took 2 years, imuran, cholechisine, 100 mg pred, and more to stop Behcets. That is my hope. It happened. It does not seem PMR will be the same. 30 years older, sicker, it has me beaten. For my family, I am fighting.

I care for my disabled brother. He lives with us. Also helping with in-laws..mil with Alzheimer's. Plate is full.

This group is a blessing, learning is essential. It is so helpful. Gratefully,

MariGrace

9

I'm on Pradaxa (dabigatran) - 2x daily so only lasts just over 12 hours anyway and it has a reversal drug. It is approved by the FDA for DVT/PE. Perhaps worth asking about?

No - PMR is another kettle of fish altogether. But for 75% it does burn out in up to 6 years. I appear to be in the 5% who get it for life. GCA does seem to be a bit shorter though.

I'd say your plate was dripping off the edges, not just full! At least you have a good medical team looking after you - that is always a plus.

10

Thank you for this information.  There are two appointments this month. I'm going to bring this up with my internist who is prescribing the blood thinners.  Do you have any side effects?  The Eliquis really makes me dizzy and my legs get numb.  I take two a day, also.  

I'm going to try to get off the methotrexate, too.  It doesn't hurt to ask.   The rheumatologist is prescribing that and I'd like to try to reduce the prednisone without it.  

Gratefully,  MariGrace

11

I really don't have any side effects I can identify - maybe I'm lucky. They are capsules and you do need a good drink so you don't feel them going down. 

Personally, I don't think mtx does anything for the vast majority of people - but you can't tell of course until you stop taking it! It isn't something I fancy trying - I've been on pred a long time but I do well on a moderate dose and have no identifiable side effects. That'll do me for now.