Hello everyone,
My name is Majed (sounds like 'magic' but with a 'd') and my grandmother was recently diagnosed with Sjogrens Syndrome. She's 83 years old and is otherwise in perfect health. Her symptoms are mostly peripheral neuropathy in her feet, lower legs and hands, particularly the left hand. Her doctor has put her on prednisone for now.
I've searched the forum and found a good list of supplements for her to discuss with her doctor. However, I was curious if anyone has tried 4-aminopyridine, also known as 4-AP? I'm a paraplegic, so I'm somewhat familiar with nerve disorders and treatments. I don't take 4-AP myself, but I do know some folks with nerve disorders who do take it with good results. Basically it's supposed to amplify the function of deteriorated nerves, so I've wondered if it could help her neuropathy.
I'm very sorry for you folks who suffer with this disease. I can empathize as someone who also lives with the neuropathic pain associated with spinal cord injury.
Thank you.
Hello Majed -
Welcome to the forum.
I have not heard of the supplement 4-AP before. I imagine others who are here might know of it and I am sure they will chime in soon.
I am sad your grandmother has the neuropathy. I know it can be quite challenging. I get it sporadically in my right wrist and both hands finger tips. My primary doctor hasn't been too concerned about it though as I have other health issues she feels are more important.
How long did your grandmother have symptoms before she got diagnosed? Many folks here wait years to get a diagnosis and as you know I am sure how frustrating all the doctor appointments and tests can be.
Most folks on the forum list their diagnosis and medications at bottom of their signature and profile. My main health problems due to sjogrens are the horrible dryness throught my body; joint pain and stiffness; extreme fatigue and digestive upsets.
Prednisone is one of the medications used for sjogrens and it makes most of us feel great but its not one many can take for long term because of its side effects. I have never heard of it helping neuropathy but I am not a doctor or pharmacists either. I hope it gives your grandmother good results.
There is a lot of great information here which may help in some way.
Anyway hello and again welcome.
Deb
Hi Deb,
Thanks for welcoming me, and thanks for all the information. I'm very sorry that you have to deal with so many debilitating symptoms.
My grandmother was diagnosed about 4 months ago. But she's had neuropathy symptoms for about 3 years, which started in her feet. Also, she doesn't seem to be suffering from any fatigue or dryness, but she's been anemic at times and she's had a rash on and off.
Just as you mentioned, it was difficult to diagnose because the symptoms were so random. Only within the last six months has she developed anemia, the rash, and hand neuropathy, so she assumed it was just sciatica for the first couple of years. She's also quite stubborn about visiting the doctor.
I have Perif. Neuro. that and the fatigue are my main symptoms. My nurologist has never offered that drug.
Perhaps others have not heard of it either. That might be why not many folks are adding to your thread despite reading your post.
I see. It's sold under the name "Ampyra", if that rings a bell. I believe it's also been used for fatigue, but it's typically used for MS.
Thank you.
Hello and welcome, Majed. You are a wonderful granddaughter for taking this on for your grandmother!
4-AP ( fampridine, dalfampridine, Ampyra, and Fampyra) is a fairly recent developement in treatment of MS, since around 2010. Prior to that, it was mostly used in research, as a selective potassium channel blocker to determine potassium channel types. It seems to allow MS patients some improvement in vision, motor skills and fatigue. It has also shown promise in spinal injury treatment.
It is also used as a bird deterrent, which gives me a bit of a pause; in birds it causes seizure activity ( in the proper dose) which results in scaring a flock away from the target area, like airports for example. Humane societies are not fans.
I'm not sure if it's something available OTC as a supplement; drugs with similar chemistry (calcium channel blockers for example) are Rx and use is (or should be) closely monitored. Overdose (or I'm guessing sensitivity) can cause paresthesia, seizures and atrial fibrillation.
No dryness or fatigue? uhmmmm..have they checked for other things that maybe causing this such as b12 deficiency? Any new medications or supplements. I just read that too much zinc, or B6 can cause issues???
So many things can mimic, especially in the elderly. Thank god she has you looking out for her. I know its hard when they are
stubborn, reminds me of my grandmother..
Wish u luck!
Dawn
Many people take B12 and Alpha Lipoic Acid to assist the body in repairing damaged nerves. This is a general thing, not necessarily specific to SS.
Thank you all very much.
I asked my grandmother today if her eyes have been dry and she said they have, but no real fatigue.
We'll give these supplements a shot before pushing for any medication like Ampyra, starting with the vitamin B12 and Alpha Lipoic Acid. Of course we'll run by her doctor first.
Thanks again, folks. I'll report back any improvement she might make.
Ask her doc about Pernicious Anemia...a lot of
Elderly get this..would explain some of her symptoms.
GURSIE
Quote from: gurs on July 15, 2014, 05:26:55 PM
Ask her doc about Pernicious Anemia...a lot of
Elderly get this..would explain some of her symptoms.
GURSIE
I looked into this last night and she's had all the symptoms of the prolonged B12 deficiency; confusion, depression, loss of balance, neuropathy...
She's also been anemic for no explainable reason and she had some Pernicious Anemia symptoms leading up to the neuropathy; loss of apetite, pale skin, loss of concentration... According to what I've read, an autoimmune disease (e.g. Sjogren's syndrome) can attack your stomach lining and prevent vitamin B12 absorption.
She spent 8 weeks between a hospital room and an inpatient rehab facility. They tested her for everything, but this was never mentioned. I think this is what she has, it seems so obvious.
Thank you very much, GURSIE.
I think my gastro said that during a colonoscopy they can determine for certain the pernicious anemia? I think b12 injections are what they use for treatment.
Good luck though...like I said, Grammie is lucky to have you.
Gursie
Hello everyone.
So, my grandmother was diagnosed with Sjogren's Vasculitis. I'm sure most of you are familiar with this condition, but basically it's the inflammation of blood vessels throughout the body. It seems to have affected my grandmother's hands the most, particularly the left hand; at least she's right-handed.
She was on prednisone for a while and she tried numerous supplements, but the best I can say is that she hasn't gotten worse. I'm wondering if she should take a high dose anti-inflammatory like 800 mg Ibuprofen. She'll see her rheumatologist pretty soon.
Majed - I'm sorry that there is not much I can offer about your original question. It sounds like you are looking at lots of different approaches, and that is probably the right thing at this point. Especially if there are any recent changes to either her health or her environment.
To some of the other posters - can I just say, you are amazing in your detailed knowledge. Thanks for being here, and chiming in when you have info. I (and many others) really appreciate it.
Hi hon, Thanks for seeing after your gramma. It's Sjogren's WITH vasculitis. It is when the patient develops inflammation of the blood vessels. Remember, in SjS the white cells attack your mucosa and saliva. So it isn't white cells attacking the blood "in one's blood vessels." The vasculitis is one of the myriad of conditions which can develop in "some" SjS patients.
I have never even heard of this. I googled it as I was curious. I think this is the first time I have seen it come up. Haven't a clue as what to do. I wonder if vasculitis also occurs in old age. I wonder as I am right behind your grandmother! I'd like to know.
Thx for your post. Tell you gramma we are all rooting for her..and you to help her too!
Warmwaters and Cccourt1942: Thank you for the kind words and the information. I hope that by posting my grandmother's experience in great detail, it'll help someone in the future the same way that all of your information has helped me.
Following the vasculitis diagnoses, she was given a nerve conduction test. We're just waiting for results on that at the moment. I'll report back if we find a effective treatment.
Hello everyone,
So, my grandmother is going to be treated with a series of Rituxan injections. I think they're targeting the Vasculitis symptoms, since they're the most debilitating. Her only other Sjogren's related symptom is dry eyes, at least at this point; she was dealing with fatigue, anemia, and no appetite early in the diagnoses.
Does anyone have experience with Rituxan?
Thank you.
Hello,
I wanted to post an update about my grandmother's condition for future reference.
She just started a 6-month regimen of cytoxan and has tolerated it fairly well. The regimen consists of 1 infusion per month. It's still too early to see if it's helping, but she thinks that her right hand has gotten stronger (it recently started to deteriorate like the left hand) and a persistent shake has subsided. Fortunately, it sounds like vasculitis is a treatable condition with the possibility of full remission.
Thank you for all the help and kind words.
Majed
Thank you for updating us on your Grandmother's treatment. Please give her our very best wishes.
And thank you for being her advocate on the forum.
Kathyx
Thanks, it is always good to hear the outcomes. My best to you and your grandmother.