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Overwhelmed. Possible Mcas, More Meds, New Docs Need Assurance


Kris4444

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Hi,

I'm feeling very vulnerable and overwhelmed right now and need some reassurance or at least some ideas to help me get my mind straight.

Yesterday I saw a new neurologist who specializes in the ANS. I had gone to Mayo in 2013 and was diagnosed with a hyperadrenergic state due to high NE levels. After that I was diagnosed with EDS and also have autoimmune hepatitis, lupus, RA and scleroderma sine scleroderma. The new doctor took one look at my flushing pictures that I took of myself after exercise or riding and said I probably have a mast cell activation disorder and recommended seeing an immunologist. I had seen one without much help. He is planning on re-running a test to check my NE levels to see if they are still high and we will do that next week, but I'm really starting to freak out over how much is going on with me and how much medication is being thrown my way again. I fought really hard to get off meds and keep them to a minimum but my body is out of control right now and I don't know what to do.

The autoimmune hepatitis is new so we are treating that aggressively with the pred and Imuran. They believe that the drug Humira caused the AIH. We are starting to wean off the pred and my rheumy wants me to consider going on another injectable biologic in a different class. I told him no and asked for other options, he mentioned Xeljanz, a new drug. This scares me.

The doctor from yesterday wants to try a drug in the clonidine family for the hyper state and if I go back to an immunologist I will be put back on H1 and H2 blockers again which is MORE medication. I am so totally overwhelmed right now with everything that is going on and I don't really have anyone to talk to about it. I'm on so many meds already. Part of me wants to stop treating everything and just see what happens. I will continue to take the pred for the liver but what if after that I just don't take anything for the autoimmune issues for a while and give myself a break? Or maybe I should go the homeopathic route? Or maybe I should trust my doctors and just swallow my pills like a good girl? I really, really don't know what to do. Every time I turn around something else is wrong with this body of mine.

The reaction I am having to exercise is very dramatic and I'm afraid it could be serious but I really don't know. When it is happening it is surreal and then when I'm finished exercising all heck breaks loose and the vertigo, flushing, sweating and shaking gets so bad I can't stand up and have to sit. It scares others around me and makes them very uncomfortable. In reading about anaphylaxis it seems that is exactly what is happening to me after I ride or workout. I have an epi-pen prescribed from the immunologist but I'm afraid to use it.

I truly am so very overwhelmed with all of these diagnoses and medications and all that is out of my control. What do you do when you feel this way? I feel like I'm drowning...

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When I feel lost, out of control, and overwhelmed, with my normal outlets being closed off; honestly I cry....sounds so silly and simple (never use to), call on my support ppl( here and close understanding friends), let all the random thoughts and feelings loose. Then I take to mediation ( or prayer). I am not sure if you are lacking support in this area or in general...If you have ppl close by can someone come and sit with you or a person you can call ...To just listen.....

I truly empathize this storm you are going thru. When there are so many things going amuck it is overwhelming to know what to tackles first. Sometimes we just don't know what to focus on. As a care taker of my spouse (Diaylsis patient with heart issues) it comes, these storms.

In the moment you don't know if you should put your snow boots on or duck and cover...if you are able to take get your Drs to work together as a team, if that is an option to help come up with the best solutions, understanding your concerns on being on a ton of new meds and how your body reacts....maybe like a group conference if they are at different medical facilities...and maybe include you after so you have a better idea and several actions plans...

I am sending you cyber thoughts of encouragement to hold steady you can do this...not fun but you are strong...Keep posting there are so many knowledgeable ppl here who understand and care.

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That is what I said this morning to my Mom, that I need a good cry but I just feel numb. This has been going on for so long and just when you think you have one piece of the puzzle figured out the whole mess falls apart again and more tests are ordered and new drugs are tried. I'm just sick of it. I want to have some sort of a life back. The simple joy of riding a horse without the horrible things that happen during and after.

I have lost many people who were once close to me because they don't know how to treat me or what to say. I try not to talk about the health stuff but it always comes up. My most exciting outings these days are to the hospital or doctors visits. It is starting to take over the world again and I don't want it to consume me like it has in the past. I just wish I had someone to talk to who understands. That is why these forums are so important. You guys get it. Thank you for reaching out to me Faye.

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Hi Kriss

Really sorry to read of the the numerous problems you are having at the moment, I hope you manage to find a solution to managing it all

I saw you mention xeljnz although not the same condition you have I having being following the progress of patients taking this drug for autoimmune alopecia on a haiirloss siteThey all have blood tests each month as it is a powerful drug on the immune system which I am sure you are aware of. Many of them are having excellent results, I have read only a few have stopped due to side effects .there has been big discussions on the site about the drug . I know it has been turned down by the European commission for use over here?.Thought I would mention it as knowledge is power to make the right choice for yourself. I have also read it helping RA patients as well.

Wishing you all the best

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Thanks Dancer. I guess Xeljanz scares me because it's so new. I know they do extensive testing before releasing these drugs to consumers, but I worry that being one of the first to take it will lead to problems 10 years from now. I'm really considering taking a break from the autoimmune meds, a vacation if you will, and maybe focus on the dysautonomica/possible MCAD issues for a bit before adding more scary drugs to the mix. I'm sure ultimately I will need to go back on something for the joint pain and inflammation but maybe my feelings of uneasiness are my body's way of saying it needs a break. I don't know.

Thank you for the information though. It's great to know that people are getting good results with this drug. I do love my doctor and this is the drug he wants to try so the more information I can gather before making my decision the better.

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I understand your concerns on what may happen in the future on these drugs, I have turned down numerous treatments for my alopecia and other auto immune issues I have because of it. Then there is the issue of stopping the drug I always relapse, maybe one day they may find a cure not just a treatment for auto immune disease and POTS

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Hi Kris,

I'm so sorry you are going through this. I understand the feelings of too many Drs, too many medications, too many trials of new meds and not seeing improvement. Also, not having someone to talk to that gets it. I wish I could suggest something useful but I do think a good cry will help. Just know you are not alone. I sometimes take vacations from my supplements but only stop prescription meds if I see a definite cause and effect. I document EVERYTHING, food, bp/hr, symptoms, meds, supplements, exercise, activities and how I feel. I'm seeing a new AND neurologist on Tuesday and spent time over the past two weeks going over all my old diaries (16 months worth) and found a couple of correlations I hadn't before. Please keep uw posted.

P

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p8d, thank you. I won't go off my prescriptions without the doctor's approval. Yes a good cry is needed but as overwhelmed as I'm feeling I do have some hope with the new doctor. He really took an interest in my case and promised to do homework over the weekend. He wanted me to email him come Monday to see where his mind is. I have blood tests Tuesday and Wednesday this week and I'm hoping they give us some answers and a direction. That's all I really want is a plan. I know medication is necessary to treat the symptoms but when you are taking meds to counteract the symptoms that the meds are causing it starts to get ridiculous! I've been here before and I fought hard to get off meds and stay on the ones that I absolutely had to stay on. I see my med list growing longer and longer with each doctor's appointment. I don't want to end up back on 20+ meds per day again. I'm just going to keep my chin up and hope that I was sent to this new doc for a reason.

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