Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: SjoGirl on May 16, 2019, 01:32:07 PM

Title: A LOT of things -- it's overwhelming!
Post by: SjoGirl on May 16, 2019, 01:32:07 PM
So I guess I should be happy. I saw my neurologist last week for a checkup. In short, he said, you have it all, many many things wrong with you (let's say at least a half-dozen) but no one is overly severe in and of itself. He went to say that he was sure if he repeated MRIs or other tests that it would show that my issues are progressing but he didn't see a need to bother.

On the one hand, I wondered shouldn't I know if things are getting worse? On the other, and this is the one I chose to share with him, I said to him I'm still standing and able to function. While I can't do what I used to and I am, god give me strength, doing chair exercises because I can't tolerate other types, at least I can do those.

I know many others are far more ill. I just needed to vent because I get overwhelmed sometimes thinking about having so many issues. I wonder if any of them will progress or if all of them will and eventually handicap me, kill me at a young age, or bankrupt us first because we now have a high-deductible insurance plan.

Thanks for listening.
Title: Re: A LOT of things -- it's overwhelming!
Post by: irish on May 16, 2019, 03:32:48 PM
I know just where you are coming from. I have so many things that are getting worse and have added a couple of new diagnoses that aren't even autoimmune that are not good to have. I am having another colonoscopy again tomorrow. The 4th since last Sept cause they think I am bleeding again from my AVM's of the colon. My hgb is down again. I can't keep up with the health issues like I used to.

It is discouraging but not a darned thing we can do about it. I am trying not to bother my kids too much (dil takes me tomorrow to colonoscopy) cause all 33 of my kids are having lots of eventful things going on in there lives with work and kids. I drive out and visit once in a while cause they work such long hours they don't get in....and I totally understand cause my one son has his own business and his life isn't his own.

So, Im, glad you made a little squeal cause I think there are a good many of us who are reaching this point in our lives. I always think when I feel down that I least I am old and don't have to try and take care of a house, family and work a job!!!! But, I would still rather be health. :D Take care. Irish
Title: Re: A LOT of things -- it's overwhelming!
Post by: Sharon on May 16, 2019, 03:43:07 PM
So sorry to hear this SjoGirl....!
Are the causes autoimmune?
Is he prescribing anything to help?
Title: Re: A LOT of things -- it's overwhelming!
Post by: Carolina on May 17, 2019, 05:59:03 AM
Dear Sjogirl and all,

Yes, it is sometimes overwhelming.  At least I was already retired when the onslaught of Immune Disorders started in 2002.   So I haven't had to try to WORK with all of this, AND my children were grown.

Now we're living in a Senior Living Community, with housekeeping once a week, and meals prepared and served in a lovely dining room.  So I have virtually no worries, AND am no longer isolated the way I was in our old house because there are so many wonderful people here to get to know.

The disability is a constant reminder to me of my 'conditions', and the chronic, and sometimes extreme PAIN gets me down the most.

Another advantage is I have is that I have Medicare and a Supplemental plan which costs about $200/mo and is worth every penny since my expenses exceed $200 every month, so it pays for itself several times over.  I never have to worry about medical expenses and never see any medical bills.

I am grateful for all that I have, but I certainly do NOT look forward to living into my 90's with my array of conditions.   I add something each year, as well.  But so far I find more ways to treat my that's a plus.

I see so many here able to walk and dance, and realize that my 'way of life' is surely different.

But it is what it is.   

Regards, Elaine
Title: Re: A LOT of things -- it's overwhelming!
Post by: SjoGirl on May 17, 2019, 09:02:25 AM
I have neuropathy, DDD, RA, Sjs, OA and now I'm getting ulcers in my mouth about once a month. My migraines are back as is my Rosacea. I just feel ill, particularly today after waking in the middle of the night from being overheated.

I'm going to see my PA today because the neurologist is useless. I think that unless I had something specific enough that he could do something about I'm more of a nuisance than anything. My rheumy is leaving in mid-June, if need be I'll see him again before he goes.

Thanks all. I had such a long spate of feeling well I didn't expect to relapse.
Title: Re: A LOT of things -- it's overwhelming!
Post by: janny on May 18, 2019, 06:24:01 AM
SjoGirl, I just wanted to pipe in and say how sorry I am you are dealing with so many issues. I definitely feel your pain as I have been having a flare and have been basically in bed for a good portion my days this past week. I too stopped seeing my rheumie, as nothing he gave me was helping with any of my symptoms. I get my Evoxac from my primary care doc and he is actually more helpful, even in term of talking about it. Hang in there!
Title: Re: A LOT of things -- it's overwhelming!
Post by: SjoGirl on May 18, 2019, 08:02:19 AM
I just wrote a separate post but will put this info here as well. many things wrong with me.

I woke up quite ill the other night and my face looked like a battlefield, which it turns out may have been lupus rash. I saw my PA yesterday and that was her thinking so she ordered bloodwork to check. Results so far suggest that it might be Lupus (low WCB, low ABS neutrophils and low ABS lymphocytes low C3, low creatine (just), low RBC (it's always just a bit low). The ANA will not be back until next week.

This was a diagnosis that should have been made a decade ago when I saw the first rheumatologist that I visited. I know that because I went back to that clinic last year to try to participate in a clinical trial, the intake nurse said you had all the signs of Lupus. I said well, guess what, you never told me. They called and said all that was wrong was that I had low sodium.

I do still see my rheumatologist, at least until he leaves for the VA in mid-June then I will be handed off to another doc. Until then all I can do is keep putting one foot in front of the other and pray.
Title: Re: A LOT of things -- it's overwhelming!
Post by: Sharon on May 20, 2019, 11:12:35 AM
Have you tried a biological medication such as Orencia or Rituximab SjoGirl?
These meds have the potential to treat so many AI symptoms, even the neurologial ones.
Having a diagnosis of RA you should be able to get your insurance to approve a biological.
Title: Re: A LOT of things -- it's overwhelming!
Post by: lorigacc on May 21, 2019, 07:35:44 AM
  I'm in a bad place right now too.  For me, I try not to think that all of what's happening is forever.   Try to think beyond where you are at the moment.  I also have more medical issues than I have ever had to deal with. I feel like I can take them if they come one at a time, but of course that's not happening.  I am having major family issues (traumatic events) and I am sure thats why I stay as sick as I am.  I struggle to  stay positive, but am working on it.  I had a picture in my head...that by the time I reached this age...I would be very settled in my life. Right now, it's the exact opposite.  Like you, I continue to put one foot in front of the other, and PRAY.  You are in my thoughts and prayers. 
Title: Re: A LOT of things -- it's overwhelming!
Post by: Deb 27 on May 21, 2019, 08:35:38 AM
I am truly sorry you are in a tough place right now. Auto immune diseases are so tough and we deal with so much!
Are you able to tolerate any of the standard meds for SJS and RA??? I didn't see any listed. Do you take any alternative meds for AI disease?

I hate that insurance drives health care today and hard working Americans are in a bind over their health care. It's not right. The added worry and stress of all this sure doesn't help those of us with chronic disease.
Title: Re: A LOT of things -- it's overwhelming!
Post by: SjoGirl on May 24, 2019, 07:53:44 AM
Hi all, I take Immuran for my AIs and Celebrex for pain. Evoxac has enabled me to swallow and a PPI keeps my food down. (Funny to say all this in this way but it's true). My rheumy has not wanted to put me on a biologic until I might really need one both because I am very medication sensitive and so there is another level of drug to which to turn should these drugs stop working.

My bloodwork was negative for Lupus. I am concluding that I had some sort of viral or bacterial illness because I had a gastro event earlier this week which cleared my system. After that, I felt a thousand times better and my face cleared up.

I am going to be switching to Salagen for my mouth because Evoxac comes in too large a dose for my little body. I've been having a compounding pharmacy make smaller dose pills but with our new insurance fear it will cost a mint.

I do appreciate all of the thoughts and comments, you have helped me and spared my husband from having to listen too me being in to much misery. Thank you all very much!
Title: Re: A LOT of things -- it's overwhelming!
Post by: markt on May 24, 2019, 08:46:09 AM
Don't be afraid of the biologics; they have afforded many a "life."  I was afraid to try rituximab because of all of the preconceived negative connotations that come with a chemo therapy drug... but I have done great on it, and it has really helped with recovering/preserving glandular function. I can't imagine doing without...
Title: Re: A LOT of things -- it's overwhelming!
Post by: SjoGirl on May 29, 2019, 12:21:13 PM
markt thanks. I'm game it is my rheumy who has not been. We'll see what the new doc has to say.
Title: Re: A LOT of things -- it's overwhelming!
Post by: irish on May 30, 2019, 10:07:10 PM
Then there are the insurance companies. My son with autoimmune Hashimotos encephalopathy is having trouble getting approved for biologics. He has been on cellcept and it did help bring down his TPO but only to the 8,000 level. He needs more cause he feels lousy all the time and has horrible fatigue. Right noe the doc is doing the game of submitting and appealing etc. It is a shame that these meds are so darned spend. Good luck to all. Irish
Title: Re: A LOT of things -- it's overwhelming!
Post by: markt on May 31, 2019, 08:38:04 AM
Suggest you find a Rheumatologist who can intelligently present why you should not be on it, especially considering your RA diagnosis.

 It's very safe, targeted, and easy to tolerate.

As Irish suggested, there is alot of truth that run of the mill office managers and their insurance billing departments are not used to, or even worse...willing to fight for patients getting it off label for Sjogrens (nevermind that it works).  Your RA diagnosis will be beneficial in getting it covered and with the preauthorization.

Title: Re: A LOT of things -- it's overwhelming!
Post by: irish on May 31, 2019, 01:00:33 PM
My son goes to the same immunologist that I do and they have an opening into the pipeline for IVIG drugs as doc does research for a couple of the complains. Im afraid to ever leave this doc and go closer to home for IVIG cause I don't know if these infusion centers would be able to get products for me. The way I get it an infusion center around my home base is only able to get one product to treat my myasthenia. No choice---only the couple of products that they keep on hand.

It is really tough out there now. Do searches on IVIG shortages and since 2018 and ongoing into this year the shortages are constant with all products from all manufacturers according to the sites I have been on. Good luck all. Irish
Title: Re: A LOT of things -- it's overwhelming!
Post by: SjoGirl on June 02, 2019, 04:41:04 PM
Thanks all. I see a new rheumatologist next time around she may have a different opinion.

Right now my RA seems to be under control, it's OA that is causing me great pain. It's also because I cut back on pain meds then missed a dose altogether (over this weekend). I have been in terrible pain since the middle of the night so have to jump back on the pain med bandwagon.