Additional autoimmune disease now.

[Aleish]

After 30 odd years with fibromyalgia I started developing more intense symptoms and lost 1/4 of my body weight. At that time was diagnosed with GCA /PMR . That’s was given to me 4/2017. Prescribed high dose of prednisone and got started on Actemra and in less then two years was coming along ok. Had to stop the Actemra this January because I developed Dividiculitis. Also over the past couple of years I have had additional positive tests that were connected to more autoimmune diseases. Ie: ANA. P anca , and others. They say I have Sjögren’s, possibility of Lupus and one Rheumatologist thinks slight case of Wegners. On top of that I have degenerative disc disease from cervical and down. I’m 75 and have stress from family issues. One of my Rheumatologist feels I should seek help at ohn Hopkins, in Maryland. I live in Florida. That is a bit unrealistic for me. I’m under the impression that they consider this as overlapping connective tissues disease. Not exactly sure . I’m assuming that Hopkins would diagnose more specifically and look into other biologics. I feel horrid and hopeless. I’m very weak and depressed. Pretty much unable to function. I do leave house when i have to but it’s not easy. My husband drives and stays by my side when out. Is this decline typical for people with my history and age?

[Hidden]

Hi aleish..it sound horrendous. We know that a/I conditions like to travel in pairs and groups sadly. You really need to know what's going on with your body if at all possible. Uncertainty is very hard to live with, especially when propped up by pain and fatigue.

I don't think you should accept it as some sort of normal decline. We all feel older and more fatigue as the symptoms and possible new illness pop up. You need to find the best strategy that affordable, try to sort out whats going on and develop an effective treatment plan.

Hope you feel a bit better soon. I would be more surprised if you weren't feeling low, weak and depressed. 🌻

[Blearyeyed]

So sorry to hear you are going through even more.

I don't think anything is typical for any age when it comes to getting a growing list of AI conditions , unfortunately they seem to act like buses for some of us.

You don't see one for ages and then four turn up at once.

I am sure that it probably is even more tiring when you are 75 and also suffering from other types of stress.

John Hopkins is a distance and the stress of travelling for medical care is hard but it still might be worth considering if you have your husband to support you and take as much rest as you can when you have the appointments.

It would definitely be worth making some more enquiries about to see it could help you and how they can support your needs while you go .

You could contact your current doctor and ask if they could give their honest view of how much quicker you may be diagnosed if you went there instead of continuing in your area.

If it's alot quicker , or they are more specialised so could help choose a better drug programme for you with less experimentation , it could be worth it.

You could also ask Hopkins if they are able to make special arrangements for patients coming a long distance .

See if you can have all your initial chats with consultants and tests in one trip then discuss it soon after , or get results and treatment soon after by staying there . If that is possible , again one painful trip may be better than months of to and fro close by.

When you have more information you can decide from there with your husband's support.

It's horrible to go through diagnosis with these things , but trying to use any techniques you have to relax , rest and stay calm will help you get through it , reduce the stress and hopefully keep a flare at bay.

Please keep us posted on your decision or ask any more questions as you go along.

Take care , Bee xx

[Aleish in reply to Blearyeyed]

Hi Bee,

Have you got a better picture of your diagnosis? Are you on meds that are helping?

I just reread your post. I see a similar problem going on.

Sheila aka Aleish

[Blearyeyed in reply to Aleish]

Sorry just seen this , I will PM you xx

[Soraya_PMR]

Is your current rheumi able to contact John Hopkins for advice? They could maybe help with interpretation of test results and recommend further testing +/or treatment.

[Aleish in reply to Soraya_PMR]

I was given a sheet on last visit with the information I needed to go to Hopkins. These docs are so busy in today’s system of medical care that those situations of them calling for you are long gone.

[PMRpro Ambassador]

I wouldn't say it was typical no - but autoimmune disease is a law to itself. Most of us just get one, PMR/GCA is one of the more benign presentations of autoimmune disease but I'd suspect that it is just one little bit of your much longer lasting autoimmunity.

I always envisage a/i disease as a shop with a load of different symptoms in boxes on the shelves behind the counter. You go in and an assistant hands out a selection of symptoms, some just thrown at you as you are turning away from the counter or even going out of the door. The ones that are biggest and bully the others into a corner are the ones the doctors notice and on which they base the label they give you - but in reality each of us has our own version of a/i disease. It doesn't always matter much - they can't be cured so the doctor's role is to work out the best way to keep them under control to allow a decent quality of life. Not always a specific medication but they tend to overlap. Some work for some, others for others. So you may not get a specific label - but doctors who look at the overall picture which is what you really need.

And when it comes to complex mixes like yours seems to be - the LupusUK community on here has a wealth of experience ith all the things you mentioned getting an airing at some point. And they are lovely lovely people.

[Aleish in reply to PMRpro]

Thanks. I did join last month. 🌺

[Blearyeyed in reply to PMRpro]

Great advice as ever Brains!

[JakeSearcher]

How about going to the Mayo Clinic branch in Jacksonville, Florida?

[Aleish]

Not recommended by my doc and even more difficult for me to go there. I have relatives near Hopkins but I’m too sick to travel. I see the neurosurgeon the end of June. Not sure I’m well enough to have an operation but possibly much of the pain is being triggered from the degenerative disc disease. I won’t do much more until I see him. I don’t want to go to pain management either because I want the neurosurgeon opinion first.