Big Decision!
Posted , 3 users are following.
Yesterday I went to my second appointment with the Rheumatologist. Based on the information she received at the time of my referral (ANA's 1:1280, positive Anti Ro's, opthalmology report, and list of symptoms) and the results of the tests she did (ANA's >1:640, positive Anti Ro's) she has concluded that it all points to Sjögren's Syndrome.
She asked me quite a few other questions regarding whether I thought my neurological symptoms were advancing. That was a hard one to answer as in many ways they are not advancing but each of the autonomic symptoms are being managed by medication. Such as Domperidone (Motilium) for Gastroparesis. Lyrica for peripheral neuropathy. Propranolol for balance and orthostatic problems. Movicol or similar for severe constipation associated with gut dysmotility. If I was not on these I think I would be in a real mess. However despite medications the symptoms are with me 24/7 and just quietly there are times when I feel very ill.
She also asked if I had joint issues. I said I felt that my ankles were getting stiffer and more painful in the last few months.
Much of the rest of her conversation centred around future treatment and management. After speaking to my Endocrinologist (an adrenal condition) and my Pulmonologist (Bronchiectasis) she felt that she would like to start me on a high dose of Prednisolone (50mg) for one month. If I responded to Pred, she would like to start me on Imuran. The inference being that Prednisolone would reflect Imurans effects and vice versa???
I have a friend who had a kidney transplant and he said to me:
"I have been taking 25mg of Imuran since the transplant. They initially told me to take 50mg but my pharmacist told me that my gout tablet Allopurinol doubles its strength and he was right, so I went back to 25 mg. It appears to have no side effects on me and is a very old original and proven anti rejection drug".
I don't know what kind of Imuran dose I would be looking at taking but perhaps others here can say what they are on for an autoimmune condition.
I am very aware of what high doses of glucocorticoids can do to the body as I was on high doses as a child in the early days of my adrenal condition and have been on varying doses all my life ever since. The Rheumatologist also outlined these to me. She wants me to have a Dexa scan in the next couple of weeks to assess my bone density. She said she would order me an Aclasta infusion prior to starting Prednisolone if we go down that path.
So I feel I have a big decision to make before my next appointment in one month's time. Some of you have already given me your viewpoints on this and I am putting them all into the mix. From my perspective I want to feel more well than what I presently do. I have lived for eight years with many symptoms and honestly don't know what will change if I do nothing more, although I live in hope that symptoms will abate spontaneously (as some already have, such as fasciculations down from 30,000 per day to about 3 per day).
I feel like a ship tossed about on the water not knowing which way to go!
Megan
1 like, 12 replies
deidra40034 Megheart
Posted
Hello Megheart, Wow, Sure sounds familiar! I just keep hearing people say the only thing they have is dry eyes and mouth. Then there is us with all this mess. It really is a lot worse than people think! They are just really lucky! They have no idea how lucy they are! My doctor wants to put me on the Imuran too, but we are waiting on my gastro doctor to give his ok. I have had an awful time with my stomach, liver and intestines. I got the ok from the Urologist...I too have problems with my adrenals and kidneys. Still working on getting all that stuff worked out with meds. My BP was all over the place, finally got that settled down, thanks to the meds for the adrenals! Sure has been a wild ride!
If it is any help in your decision making, my doctor told me the Imuran is a good, and safe one on our body, with very little side effects, and no bad interactions with the other meds. I sure wish you a lot of luck!! I really don't complain to my family, I guess that is why I am glad I found this forum, it is a relief to talk with others in the same boat! Helps to release some of this stuff inside!! The only other person I let it out to is my doctor. At least we can be here for each other on the forum...sure helps! God Bless You Megheart!!! Here is a {{{{HUG}}}} for you!
deidra40034
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Megheart deidra40034
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Oh thank you so much Deidra. That is very kind of you!
I'm interested in your comment re. hearing back from your gastro doctor before starting Imuran. Yesterday my Rheumatologist didn't mention whether she had heard back from my Gastroenterologist. My concern re. my GI tract would be how Imuran would respond to slow transit times and hence absorption of the med. Perhaps that is more of a question for a Pharmacist. I should jot that down as a question to the Rheumatologist.
A hug to you too!
Megan
deidra40034 Megheart
Posted
I too have that slow transit time thing! What joy that test was huh? I had to have a biopsy of the duodenum, the uppper intestine. I was having a real problem with bloat, so they did a CT Scan and found a thickening, and did the biopsy...all ok thankfully!! My Gastro doctor put me on Protonix to help wth my stomach. There is no ulcer, but is not in good shape from the Prilosec. Too much Prilosec, can cause a real problem. My RA doctor wants to get me on the Imuran asap, and wants the OK from the Gastro, just wants to make sure there will be no problem, he does not believe there will be, especially now that things have calmed down some. I will let you know on Monday, as I will be talking to the Gastro doctor then. Really need to do something, just been on the Pred since January, and really hurting and can hardly stand it anymore. I will ask if the Imuran comes in a shot form too...then it will bypass the stomach, which would be great for both of us! Although he did say it is easier on the stomach.
I wish you good luck, and I will let you know what the doctor has to say about the Imuran and absorption! Take care!!
{{{{Hugs!}}}}
Deidra
Megheart deidra40034
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Megheart
Posted
That should say 'your' not you!
heather72469 Megheart
Posted
Megheart heather72469
Posted
- Widespread muscle aching - this often wakes me particularly in the early hours of the morning.
- Muscle stiffness 24/7, particularly in thighs......like I have hiked up a mountain (every day) or sometimes Everest! This makes it very painful to climb stairs.
- Neuropathic pain 24/7 (burning, freezing, tingling), not just in my legs but patchy all over body.
- The last few months pain and stiffness in my ankles.
deidra40034 Megheart
Posted
Hi Megheart, Same here, the ankle thing is also new in the last few months for me. And now I have developed neuropathy in both of my feet and is going up both my legs. It started in both of my big toes, and has spread pretty quickly over the last month and a half. I saw my neurologist, he did a LOT of blood work, and I see him on Tuesday for a test, EMG he will do it himself in his office. He showed me, looks like all kinds of small electrodes that he will put in my feet and legs, and it will show a read out on a machine. But, he did say, he thinks it is the Sjogren's. I also get the tingling in my left hand. I get the sore and weak feeling in all of my muscles. I can hardly dry my hair anymore, takes me forever as I have to keep stopping, I just can't keep my arms up for more than a few minutes. And I try to use the bands to keep some strengh, but that is no longer working. So frustrating to say the least! The pains sometime seem to move all over. I have yet to have a remission that I have heard of. I sure would love to have one of those! Maybe it's when one pain moves to another place?
Do your feet ever "feel" like they are swollen, yet are not at all?? I have been having this new feeling in the last 3-4 weeks, maybe it's part of the
neuropathy. It is a very odd feeling as sometime walking I hardly tell where I am puting my feet. Even with my cane, I am tripping more.
Some time I just have to laugh at myself...other wise what would we do?
Megheart deidra40034
Posted
Hi Diedra,
I am glad you are having EMG's done. Is your doctor also doing NCS (Nerve Conduction Studies)? Be aware that NCS's do not show small fibre nerve damage which may be the cause of our Peripheral Neuropathy. The best way to reveal small fibre nerve damage is via IENFD (Intra Epidermal Nerve Fibre Densimetry).
My new Rheumatologist wants me to have repeat NCS done (they were done eight years ago and negative then). I am scheduled to have this done on 7th July. However I will be very surprised if it is abnormal. The IENFD would be the best test to show positive but it is not done where I live. I'm not sure what it achieves getting these tests but doctors seem to want to know.
For us if it proves what we are saying is correct, I'm all for it! Hehe!
I used to get those weak muscle episodes. For my legs it was like I was walking through mud. For my arms, using the hairdryer also was tiring. I have to say thankfully those symptoms have resolved significantly in the last two to three years.
The problem you are having with not knowing where your feet are is probably a proprioception (position sense) problem which causes disequilibrium. Simply put this can occur with peripheral neuropathy of the feet and lower legs. Yes it is a disconcerting symptom as one never quite knows when one will stumble or lose balance. Using a cane at this point is probably a good solution to minimise injury to yourself!
Look after yourself!
deidra40034 Megheart
Posted
I have not heard of the other two tests, at least not yet. I will ask the dcotor about them on Tuesday though. It is so helpful finding out these things! I have not known anyone else with the same difficulties! I am sorry you have them though!! I have had to use a cane for a while now, due to my back, but it sure is coming in handy right now with this! I used to fall quite often until I had back surgery. Thankfully it fixed that part. I just wish it had fixed the rest of the problem. I am just glad I can walk without fear of getting that shooting pain, and down I go! But I am very wobbly and off balance now, so it does keep me from tipping over. It sure is frustrating being 61, and at times I feel like I am 101.
Do you ever get extreme dizzy spells? I have been having those for a while, nothing is wrong that we can find. It is probably just all the meds. It was a bad one yesterday morning. I could not even get out of bed for a few hours after awakining. I could not even move my head, or open my eyes. I thought maybe it was my inner ear again, but it is gone today. Just curious if it is just me.
Thank you again for the information...I will take it with me to the doctor!
You take care of yourself!!
Megheart deidra40034
Posted
Hello Diedra,
Regarding being sixty-one years old, it is not so much your age as the fact that you have multiple health issues, which is making you feel worn down.
It sort of gets to me when my mother says I am young....ergo healthy, when she has never until more recent years known what illness really is. I know part of her denial, is that she wants/needs me to be available to her but I can't always be there for her as much as she may need or I would like. When she talks that way I feel invalidated in what I am experiencing because I am younger and what she is experiencing is 'real' because she is older. Complicated and confusing!
I think Diedra you were saying that your mother has Lupus and now Sjögren's. Talk about autoimmune conditions occurring in your family - lol! How is she coping? Does she expect more from you than you can give?
Regarding dizziness. No I don't really get dizziness. Until I started Fludrocortisone a number of years ago I was getting quite marked orthostatic hypotension. This caused a swirling kind of feeling in the head like one was about to pass out when one stood up. Also beta blockers came to the rescue when I was getting orthostatic tachycardia which caused not so much dizziness but more a feeling of weakness right through the chest and body. The best relief was to lie down.
All the best with your Gastro doctor's appointment!