Sjogrens World Forums

Hi everyone!

I took the sleeping pill melatonin last night, Apparently the pharmacist said it can take a little to work fully as it should, because of taking other meds also.Despite reading that it could cause more harm to the Auto-immunity, I'll try and ease my mind about it and see how it goes.

Tomorrow I taper from 10 to 8 mg Pred.It'll surely make the insomnia days end.

I just somehow don't feel so 'well' yet because if they claim things are being calm with the activity, such as not too much inflammation of th joints or etc, bloodwork is always ok but I know that doesn't mean anything as of that you aren't 'flaring'.

Although I have rashes and so on and just I never have had a good day really.It seems as if the Sj?gren and Lupus doesn't attack the general things the Rheumies watch out for(kidneys, joints, things like that)then I'm sure it's damaging other things.It's just frustrating that it seems as if they wait for serious infections or however to appear and then testing again or however.

It just gets frustrating because even if it's not attacking places to cause severe infections, it doesn't mean that things don't get worse in other areas...I feel the neurological symptoms getting worser as time is passing.But it's a bit of a 'pity' thing with myself that it doesn't seem serious enough for the Neuro-Immunologist that time to bother doing anything or just finally admit it's indeed this nasty Lupus(+Sj?gren) causing all that, which I already knew from the beginning.

Unfortunate that my Rheumy can't do much about this as he's not a Neuro.

I guess it's just as if I feel that they don't see how serious this also is and that it's having an impact on my life quality too.Sometimes I just feel like ignoring all that and go out despite being tired or even if I feel that I'm too tired to do things, then do it anywho.But I know that won't change anything as of finally having something show up on a test and tell them: See, I told you!Lol!

It just can drive you nutty, to accept things how they are currently I guess instead of the usual determination to find answers(I tend to have that habbit.).And wait...wait and more waiting.

I could just use some hugs.:(

I'm sorry you are having such a hard time. 

Blessings,
Jorja

I'm sorry and here's some big ((((hugs)))) for you. I completely understand your frustration over these normal tests but KNOWING that something is NOT normal. I have that going on with my lungs - it's just not normal to cough all the time and have chest pain everyday.

I hope you get some relief and answers soon.

Hi Shani,
I'm so sorry you are feeling crummy.  Lupus and SJS is a lot to handle!  Me and my golden retrievers send you big hugs and kisses!

Take Care,
Jill

((((((Shani))))))


Sending all the hugs you need! Hang in there!

Thank you Jorja, Mshistory, Jill and Lynn[/b!
It doesn't happen often that I feel this way.But sometimes one person's(doctors in this case) thought or opinion can make everything just collapse again, like there's no ending.I dislike so much when tests remain normal, yet there are obvious signs and abnormalities.I'm sure everyone has often and still remains a lot in the same boat as me:The wait and see game.

Thank you for the sweet and sincere words and the comforting hugs.


I hope that you'll eventually get your answer Mshistory, I surely know the feeling!

And Jill, I strongly agree that animals have somewhat a healing effect and can make the day so much better!I love my Whippet and my other dogs(+Moms).

Hey Shani,
They are still not sure what's wrong with me....I have SSA's positive so I could easily have Lupus and SJS!  They've ordered some new tests for me in the Spring...waiting to see of course, if I develop more symptoms between now and then!  It's scarey but it's reality.  Having these mysterious AI's gives one a very "alone" feeling and that's why I like this forum!  I also get my strength from a friend who's 43 and just found out he has a rare form of lung cancer.  I don't know how he works and goes through chemo, etc.  I only hope I can be that strong!   

Hi, Shani

Quote from: Shani on December 06, 2011, 03:52:30 PM
Hi everyone!

I took the sleeping pill melatonin last night, Apparently the pharmacist said it can take a little to work fully as it should, because of taking other meds also.Despite reading that it could cause more harm to the Auto-immunity, I'll try and ease my mind about it and see how it goes.

Oops. Where did you read that Melatonin could cause more harm in cases of autoimmunity? To me, it's that autoimmunity (and Restless Leg Syndrome and Persistent Leg Movement disorder) bring about the need for Melatonin.

Quote
Tomorrow I taper from 10 to 8 mg Pred.It'll surely make the insomnia days end.

I just somehow don't feel so 'well' yet because if they claim things are being calm with the activity, such as not too much inflammation of th joints or etc, bloodwork is always ok but I know that doesn't mean anything as of that you aren't 'flaring'.

Although I have rashes and so on and just I never have had a good day really.It seems as if the Sjogren and Lupus doesn't attack the general things the Rheumies watch out for(kidneys, joints, things like that)then I'm sure it's damaging other things.It's just frustrating that it seems as if they wait for serious infections or however to appear and then testing again or however.

I've been bewildered in the same way.

What I realized today, reading about spasticity in Multiple Sclerosis, is that the pain in joints could be neurological rather than arthritic activity. The nerves can trigger muscles and tendons to spasm, and to a certain extent they lock, and cause pain.

I wrote a note to my neurologist. He specializes in peripheral neuropathy, and I've known him August 2001. His dx is CIDP; through him I got IVIg, just once. It turns out that a really positive response to IVIg, such as mine, is diagnostic of Chronic Inflammatory Demylinating Polyneuropathy (CIDP).

If you have Neurontin/gabapentin prescribed, try a slight increase of 100 mg to see whether you notice any change in the things you think may be neuro symptoms. Even your neurologist /immunologist could supervise adding gabapentin.

Quote
It just gets frustrating because even if it's not attacking places to cause severe infections, it doesn't mean that things don't get worse in other areas...I feel the neurological symptoms getting worser as time is passing.But it's a bit of a 'pity' thing with myself that it doesn't seem serious enough for the Neuro-Immunologist that time to bother doing anything or just finally admit it's indeed this nasty Lupus(+Sjögren) causing all that, which I already knew from the beginning. 

It is frustrating. I'd suggest getting a full first workup from a neurologist specializing in peripheral neuropathy. Ask the neurologist (when you make the appointment) to evaluate both peripheral neuropathy and CNS concomitant signs of peripheral neuropathy. For example, incontinence can be a autoimmune CNS thing, when it improves with Prednisone.

Before seeing the new neurologist, or now, right when your experience with Prednisone is very fresh, list all the symptoms that improved when you were on Prednisone. Also list doses at which symptoms reappeared (or disappeared).

Quote
Unfortunate that my Rheumy can't do much about this as he's not a Neuro.

I guess it's just as if I feel that they don't see how serious this also is and that it's having an impact on my life quality too.Sometimes I just feel like ignoring all that and go out despite being tired or even if I feel that I'm too tired to do things, then do it anywho.But I know that won't change anything as of finally having something show up on a test and tell them: See, I told you!Lol!

It just can drive you nutty, to accept things how they are currently I guess instead of the usual determination to find answers(I tend to have that habit.).And wait...wait and more waiting.

I'm going to check with my rheumatologist about the hypothetical autoimmune /CNS consequences of the *other* autoimmune dx of CIDP, that he has ignored, and my CNS responses to Prednisone, which he's started giving me.  And then see my old friend the peripheral nerve neurologist.

Doctors do have a better way to put things together, and more knowledge about what to do with evidence than we do, BUT they also turn patients off for one reason or another.

QuoteI could just use some hugs.:(

Hugs {{{{ || }}}} so that we both get what we know we need.

For the best possible outcomes for us both,
Soycoffee

Shani
I am so sorry you are suffering so. I truely know what it is like to go thru this. I am sending all the (((((((Hugs))))))) that I can.

May God wrap his arms around you and protect you
harlin

HUGS!

We try to be pro-active and find out as much as we can to make ourselves feel like we're not powerless in our illnesses, but in the end we're dependent on doctors to validate us. And like you said on another thread, they can say something that makes it all collapse on us and we're stuck feeling crappy and hopeless again.

I got lucky today. I went to see a neurologist who really listened and was interested in piecing together my weird symptoms to help me. He's sending me for an MRI. I've been trying to get one ever since this started 3 1/2 years ago! He wants to rule out MS. I have alot of symptoms of it. I don't know whether to hope nothing shows up or what.

One really big thing he said is that I have hyper-reflexes that are an important sign of B12 deficiency. I knew I'm low in it, but he says pills aren't enough, so I'll be having shots every week. Hopefully the B12 shots will improve my migraines and fibromyalgia pain. The B12 deficiency could even be causing symptoms of MS!

Is it too much to hope that the worst of my problems could be solved this way? I tell you, this doc gave me such a lift, as a person. It was a private appointment so I was with him for 40 minutes or more. And even when I said I'd been diagnosed with Chronic Fatigue and suffered from depression, he didn't do the, "It's All In Your Head!" crap on me!

Shame it cost so much, but it was worth every penny. You pay peanuts you get monkeys. And I've seen plenty of them recently.

I wish you could see a neuro doctor who sees YOU as a person, who will show you respect and actually listen to what you're saying and help you.

with love,

Suzie

Dearest Shani
Sending you many gentle ((((((((((((((HUGS)))))))))))))
Aussie Mum

Oh Shani so sorry it's so rough right now!  Lots of hugs and prayers to you and this whole topic sounds like they/we all need them. Then again, how about the whole forum too!  Group hug!

Oh, Shani,

This is so very very hard!

I think, frankly, that once there's a diagnosis or two, doctors feel like they've done what they can, and sort of lump everything under the diagnosis!

There are so many aspects of both Sjogren's and Lupus!  So many things to cause pain and misery, and they need to be respected and followed up.

I honestly think many doctors just get tired of the various conditions and want to prescribe one or two things and move on.

Maybe I'm wrong.  But I think that's why we often get 'odd lectures' on obvious points, like the need for sleep, or the need for exercise.

On the one hand they have patients with so many conditions, many of which aren't well identified and some of which have no treatments, and on the other there is frustration at NOT being able to be the bringer of health and happiness.

I don't think this is exactly comforting, and yet I think this 'conflict' is at the heart of the problem for many of our doctors.   

In addition, when we are taking several medications, there is every chance that one or more of them is adding problems!   A good medical practice or hospital actually has a pharmacist or doctor on staff who concentrates on examining the possibilities of prescription caused problems.

Joe's suggestion of breathing in:  I am   and out:  calm, is essential.   Developing some sense of calm, of understanding how complex my problems are, and to approach my doctors as partners in the problem has helped me.    I try to accept that this is going to be a process that takes time.

Now, there ARE doctors who don't do well with this approach.   I don't keep on with them.

Please keep us posted, Shani.  I hope the melatonin helps you.  There are negatives with EACH AND EVERY drug, prescription or over-the-counter.  Not all negatives apply to everyone, and detecting when and if a side effect is in play can be very difficult.   Go slowly, follow directions, stay in touch with all of us, do your reading, listen to your own heart and your own body...............

Hugs

Elaine

Quote from: Carolina on December 07, 2011, 12:38:40 PM
Oh, Shani,

This is so very very hard!

I think, frankly, that once there's a diagnosis or two, doctors feel like they've done what they can, and sort of lump everything under the diagnosis!

[ . . . ]
Please keep us posted, Shani.  I hope the melatonin helps you.  There are negatives with EACH AND EVERY drug, prescription or over-the-counter.  Not all negatives apply to everyone, and detecting when and if a side effect is in play can be very difficult.   Go slowly, follow directions, stay in touch with all of us, do your reading, listen to your own heart and your own body...............

Hugs

Elaine

I agree completely.

Also useful is Elaine's comment on practices having a doctor or pharmacist on board to check for interactions. I have that automatically with the Coumadin Clinic, where pharmacists are available to test one's INR (level of Coumadin, an anticoagulant drug) and to check one's list of prescription and non-prescription drugs. My otherwise excellent pharmacy has never given me feedback on drug/drug, drug/OTC, and OTC/OTC interactions, not even when poked.

I've had two doctors, now, object to the number of supplements I take. I'm not very articulate in response, unfortunately, and they don't want to be convinced in a different direction. I will say here that a lot of the supplements are replacements for prescription drugs that caused problems.

After I wrote so much, I did check on line about Melatonin and autoimmunity. I did not find any comprehensively instructive information about its use with autoimmune dideases. Also one site had the weird information that all individual studies of one diagnosis with Melatonin usage were positive, while mixed studies tended to find problems, mixed meaning mixed diagnoses, usually.

I have used Melatonin since the 1990s, without problems until this year, starting with using it to overcome jet lag, when I was still traveling internationally. I have NEVER taken as much as 5 mg of a suitable brand. Currently I am taking the highest dose every, at 2 x 1mg tablets at night, and occasionally one more if I have trouble sleeping. In the U.S. the *standard* dosage available OTC used to be 3 mg. For a long time, I cut those tabs in quarters. In the past two years  I've been able to get 300 mcg tablets, 1/100 of 3 mg. With the onset of Sjögren's, I seemed to need more, so I moved up to 1, and then 2, tablets at night. That's far less than the 5 mg prescription you mentioned.

I've had an immune disorder, Chronic Inflammatory Demylinating Polyneuropathy (CIDP), since September 2001. I've probably had Sjögrens even longer, since 1996. Until this year, neither has interfered much with my life. It's true that I haven't taken Melatonin all that time, because I developed a sleep disorder, and fell asleep within three minutes or so of lying down in bed.

It's true that I don't feel as well as in 1998. I don't think it's due to the bad effects of Melatonin, but I cannot prove that conclusively.

Please keep asking questions about your care, thinking about it, asking online, and carefully assessing doctors.

All the best, with {{{}}}
Soycoffee

{{{{{{{een dikke knuffel}}}}}}}}}
(a big hug)

I know this is hard for you, but just hang in there.

We all are here for you!!!

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I'm sorry your so down... :o....HUGS.....from me to you....

Feel better! Mary