I can't believe this disease!!

[Linny3]

I have been doing fairly well handling PMR. Have been on methotrexate for 5 weeks and have decreased pred by 1 mg. All went well. The other day I stood up and the pain that went thru left hip and back was excruciating! Couldn't move! Couldn't straighten up. I sat back down and waited. I really thought I had a stress fracture, that is how bad the pain is. Finally I could get up and move around but in sooo much pain. After about 2 hours everything cleared out. ( This was in the morning)

For the last 3 mornings the same thing has been happening. It is AWFUL. I am so done with this disease. I am on 13mg rayos down from 14mg. in a 5 week period.

Now I have to get up at 5am in order to try and be out of the house by 7:30.

AAARRRGH

[Hidden]

Have you been in touch with your Doctor or considered it may need X-raying? Rather than continue as you are as you may be causing more damage?

Certainly l’d ring the Rheumatology Team to let them know what’s happening as seems to be caused overnight.

Kind Regards

MrsN 🌷

[Linny3 in reply to Hidden]

Thanks for the reply. No I haven't called dr. Was going to go to emergency and get xray and then it pretty much cleared up. So, I don't think it is a fracture.

[Hidden in reply to Linny3]

I’d still be very wary, you should tell the Rheumy Team & if it happens tomorrow go to A&E it’s really rather unusual that it’s so bad & then it passes?......

[PMRpro Ambassador]

You have reported this to your doctor I hope? That is really not typical of PMR unless you have developed sacroiliitis but that doesn't usually go to come back.

[Cazdud]

Why don't you take it at night so your better in the morning.

[Linny3]

Thanks for your reply. I do take my rayos at night and it has been working well. I really think the 1 mg drop has caught up with me. I have had a terrible time coming down from 15mg in the last 7 months. That's why I agreed to start the methotrexate. This is the way pmr acts on me. It picks a spot and the pain is off the charts, then it disappears. I had this pain in my ribs so bad last year I finally went to the er and had xrays only for them to say it is the pmr acting on me.

[PMRpro Ambassador in reply to Linny3]

Are they SURE it is PMR. Nothing you have said rings any PMR bells for me.

[Linny3 in reply to PMRpro]

As sure as I can be. Was diagnosed almost 3 years ago. Prednisone works very well.

Just can't seem to get under 12mg. and stay there, after all this time.I started with pain in both hips and into groin with neck and shoulder pain and arm pain so bad I couldn't lift my arm and had a hard time getting out of bed. Everything was about 60% better after starting prednisone. About 1&1/2 years into it I tried methotrexate and got down to 6 mg but as I found out the decrease was too fast and it put me into a major flare just like in the beginning. I was left with extreme fatigue and morning pain and stiffness until the higher (15mg) pred kicked in. I would say I have about 70-80% less pain since using the rayos at night. Mornings have been much easier. A month ago I started decreasing slowly and have been at 13 mg for 6 days when all this struck in my hip and back. It is the same pain I have always felt.

Right now I have my usual level of pain and I can get around ok. I upped the pred by 1/2 mg. this morning. I will do the same tomorrow and see how it goes.

I just hate to go in and take more xrays ( I am going to light up pretty soon) only to be told they can't find anything and it is either the pmr or the fibro.

I appreciate your concern.

Thanks for the reply

Sometimes this all just gets to be more than I can handle.

[PMRpro Ambassador in reply to Linny3]

Half a mg? How do you do that with Rayos.

By the way, I find it works better taken a bit earlier than 10pm. Don't know why though,

[_multistrada in reply to Linny3]

I’m absolutely with you on how you feel about this horrible disease it’s frustrating makes you feel so like some kind of a fraud it’s not like having a broken arm

I’m exactly the same position as you and understand and empathise with your frustration fingers crossed for a better tomorrow

Martin

[Linny3 in reply to _multistrada]

Thank you for your reply

Good Luck

[Lejazzhot in reply to Linny3]

So sorry for your extreme pain and frustration. I so sympathize. You are describing my experience. The 2 times ive gotten to 10, my symptoms returned leading me whn i cld no longer bare it back up to 12 so i can have a life. the rigidity, pain and weakness in shoulders and arms -have all been at times so extreme that I’ve been tested for types of temporary paralysis. Have resisted adding methotrexate to the mix. Frustration doesn't begin to cover it!🔥

[Linny3 in reply to Lejazzhot]

Thank you for your reply. Nice to hear from others experiencing the same thing.

[Linny3]

I use reg pred 1mg cut in half. I usually take rayos between 10-11pm. I'll try closer to 10pm and see what happens. Thanks

[PMRpro Ambassador in reply to Linny3]

The instructions tell you to take it at 10pm, either within 3 hours of a proper mean or with a substantial snack, preferably bread and meat or cheese. This creates the correct conditions in the stomach for the coating on the tablets to break down and release the pred all at once at 2am. This mimics using plain pred but is 4 hours later without having to wake in the middle of the night. This delay ensures the peak of pred in the blood is just before 4am - the time at which the inflammatory substances are released in the body and so they never get to create inflammation as the pred is there waiting for them. If you take Rayos late or under the wrong conditions then it isn't going to be as effective.

[Chihuahua1]

How long have you been on methotrexate? It could be your body is reacting to it. It happened to a friend of mine and once taken back off it he was ok again. It doesn't suit everyone and can cause severe bladder damage also.

[Linny3]

I have had 5 shots of methotrexate. Interesting about the bladder, I will ask about that. The pain I have reported in my hip and low back is so much better. I upped my pred. to 14mg for a day then 13 &1/2 for two days. It is unbelievable how the pain roams around and how incredibly awful it can be.

Thanks for the reply

[PMRpro Ambassador in reply to Linny3]

"It is unbelievable how the pain roams around and how incredibly awful it can be."

Tell me more - that really isn't typical of PMR.

[Linny3]

Ever since I was diagnosed, I have had severe pain in one or more places at a time. Once I was given prednisone, the severity of it decreased. Ever since I have developed sever pain that lasts from 2-5 days in various places in my body. If I take a little more pred. it disappears as fast as it came on. If I try to wait it out it only gets worse. I can be affected in neck, shoulders and one arm, feet, hips and back. I believe it mainly attacks the weak areas of my body ie. back and hips. Have been to emergency twice with rib and or hip/back pain. Each time, after xray, they couldn't find anything and agreed it was probably the pmr or possibly fibro. In 15 years I have not experienced this level of pain with fibro. I also have had two mri's, one back and one foot, which did not show any problem that would cause this level of pain.

I have had one back stress fracture and two foot stress fractures, probably due to the prednisone. I have back problems, but this pain is just different then my usual back pain.

Thank you for your reply

[PMRpro Ambassador in reply to Linny3]

Is it just in muscles - or are joints involved too?

[Linny3]

I believe My neck and arm would be muscle pain. My feet ache and burn, sounds like nerve but had that checked out, and I don't have PAD. So I would say muscle for feet. Hips are a bursitis like pain. Had cortisone shot into bursa and it helped some. Thighs are Very tender to touch and they ache where hips meet thighs. So maybe a little of both, joints and muscle. Rib cage is muscle. Back has a lot of issues, but the sever pain feels like muscle.

[PMRpro Ambassador in reply to Linny3]

My foot problem was tendonitis/synovitis. Not a lot of muscle down there. Very strange - especially if you say it comes and goes.

[Linny3]

I have seen a foot dr. 5-6 times and all he found was a small stress fracture and didn't know what was causing the burning and aching I can get. Ran mri and found nothing.

I know it all seems odd. My rheumatologist thinks it is odd but still believes it to be pmr. I am just presenting a little differently than the norm. Story of my life!

However, the morning stiffness in neck and hips (bilateral) and the fatigue are all very much pmr.

I do not have any swelling or heat in the joints.

When I am on enough pred the pain isn't very bad. It is always when I try to reduce that I end up with this major pain in an area or two in my body.

[PMRpro Ambassador in reply to Linny3]

Except the morning stiffness can be a characteristic of a range of inflammatory disorders and they often also respond to pred. Fatigue belongs to all autoimmune disorders - it is pretty much a given.