Anyone With PMR Also Diagnosed With Sjogren's?

Posted by hopeinal @hopeinal, Jul 30, 2023

Hello all, I was diagnosed with PMR in March and have been on 10mg Prednisone since then with great results. My only side effect has been thinner skin, especially on my forearms which are a mess of booboos and bruises.

A few days ago, the inside of my mouth started burning and my eyes became very dry and bleary. My right eye has a burst blood vessel. I Googled my symptoms and it seems as though Sjogren's Syndrome might well be the culprit. I've read that many people who have one autoimmune disease will have one or more others, so I'm curious to see if anyone in this group has had Sjogren's along with PMR.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@joan7

I am so sorry that you are suffering so much. I hope you can get an answer after 30 years; that is just crazy! I couldn't imagine dealing with all that as long as you have. God bless you and I wish you better health and some answers to what is ailing you. I think I'm going to look into natural antioxidant and anti-inflammatory foods and start making a concoction for morning breakfast. Maybe I could make a smoothy (no sugar) with blueberries, spinach/kale, etc. I don't like eating certain fruits and vegetables but this may be a way around that. My son's a Chef so I may ask him to fix whatever tastes nasty, probably everything, lol. I keep thinking of this story I read many years ago how a girl in her early 20's was diagnosed with Ovarian Cancer and how she formed a diet that was very strict but was overflowing with antioxidants, anti-inflammatory foods, etc. She actually put herself in remission and was cancer free. It can't hurt at this point.

I had Hoshimotos disease since 2008 (had a Thyroidectomy for Thyroid Cancer that was left undiagnosed and they didn't find out until after my surgery that it was cancerous; I knew it was cancerous by the way I felt. I was already having black outs from my thyroid crushing my wind pipe, but that's a whole other saga, geez louise that really sounds bad, but I guess time heels). Although I would never admit it to my kids (both have Special Needs and one is now completely self-sufficient, the other is still a project in the works), lately most days it's hard to get out of bed with the pain and get moving for the first half of my day. Here it is 2 pm and I'm ready to lay down. I'm exhausted just from vacuuming the hallway and doing a load of wash. I've been going to Physical Therapy post knee surgery, but sometimes I feel tired after that too. If I find anything that can be of help to any of us, I will definitely post it. There has to be something out there that is naturally healthy and is not another pill. My prayers are with you.

Jump to this post

I'm not "suffering." I actually feel quite well at the moment. My 40's and 50's decades weren't the best. My 60's decade was a big improvement especially after I got off Prednisone.. I'm not 70 yet but I'm looking forward to my 70's decade.

There was a time when I didn't think I would make it to 70. With 2 months to go,... I should make it.

REPLY
@bradninchgirl

About 25 years ago, after many, many frustrating doctors visits I found a progressive doctor that recognized what was happening to me. I believe his treatment delayed anything worse from happening for decades. I was lucky as it was 25 years before I met another doctor who had heard of anything other than Lupus. Most of them were stuck in the 1950s where women imagined every symptom they had. His treatment with hydroxychloroquine (I think that's what it was called) saved me right up until I reached 74 that it all went down hill. That happened after I retired and my medication copay climbed to $100 and I couldn't afford it.

Jump to this post

Not really related but I have to shop my drug provider each year. I give a list of my medications to my medicare agent. I have had to switch during open enrollment the last 3 yrs finding the most affordable that covers the drugs I need to take.

REPLY
@tuckerp

Not really related but I have to shop my drug provider each year. I give a list of my medications to my medicare agent. I have had to switch during open enrollment the last 3 yrs finding the most affordable that covers the drugs I need to take.

Jump to this post

Thany you. A good idea I hadn't thought of doing, although I have felt so awful these past few years I probably wouldn't have had the patients to do that.

REPLY
@bradninchgirl

Thany you. A good idea I hadn't thought of doing, although I have felt so awful these past few years I probably wouldn't have had the patients to do that.

Jump to this post

I use a medicare licensed representative. Doesnt cost you. I just send her my list of drugs and my wifes and she tells me the best one. Medicare A&B and my supplement never change. Those are pretty fixed in what they offer. But your drug provider has different guidelines. Currently using UHC but its $25 month but covers one cholesterol drug I need. But I am going to switch because I think Cigna will cover the drug at $12 month. Worth checking anyway. I think around the 15th November is open enrollment.

REPLY

I am so glad you are doing better; I must misread.

REPLY
@bradninchgirl

About 25 years ago, after many, many frustrating doctors visits I found a progressive doctor that recognized what was happening to me. I believe his treatment delayed anything worse from happening for decades. I was lucky as it was 25 years before I met another doctor who had heard of anything other than Lupus. Most of them were stuck in the 1950s where women imagined every symptom they had. His treatment with hydroxychloroquine (I think that's what it was called) saved me right up until I reached 74 that it all went down hill. That happened after I retired and my medication copay climbed to $100 and I couldn't afford it.

Jump to this post

I don’t know if you got blocked I accidentally clicked report when I was trying to bookmark your comment , then I clicked again trying to unclick it. I’m sorry if it did.

REPLY
Please sign in or register to post a reply.