New medication coming out of Japan?

[SusieW2]

I had a conversation with someone who mentioned a new medication specifically for SS possibly developed in Japan. I can't find the post and I didn't write down the name. Help! I'd like to discuss it with my Rheumatologist.

[Deniseelk]

Is it from Julie8787 post from 4 months ago?

[SusieW2 in reply to Deniseelk]

Yes, that was it, Thanks.

[harmony2 in reply to SusieW2]

Hi. please could you advise: How do you find it?

[SusieW2 in reply to harmony2]

Try looking on Julie8787 posts. If I remember right, it is not available in the US, Australia or Europe and possibly only addresses one symptom.

What symptoms are you trying to address?

[harmony2 in reply to SusieW2]

Just feel so rubbish — weak, constantly exhausted, feeling increasingly run down, nausea more and more frequent, also worsening cognitive issues. (Many more symptoms but those are most debilitating.)

I tried search window with her name Julie8787. I’ll try to poke around a little more. Is there a way to see the posts of particular user?

[SusieW2 in reply to harmony2]

I found her months ago when I first got the reply but can't find Julie8787 now. There wasn't really any significant info there anyway.

I remember being in that icky, tired place. I still am not 100%. But I did find a Naturopath who gave me advice and prescriptions that helped a lot. First he said to start taking a vitamin D supplement. Then when the blood tests came back he have me Rx for low does of a Thyroid supplement and Testosterone. This has made a huge difference for me. Regular Docs wouldn't prescribe anything because my tests were all in the "Normal" box, ie. not low enough. But the Naturopath believes that women who test below normal for Thyroid hormones should get supplements. Ditto for Testosterone. I do have to pay for the Testosterone because, of course, it is not traditionally prescribed for women.

For the nausea I take a probiotic called Primadophlus Bifidus. I have also limited my diet a lot cutting out wheat and corn among many others. I do sneak in some corn occasionally. I try not to over eat especially in the evening. Keep on trying new things and get as much exercise as you can. Good luck.

[harmony2 in reply to SusieW2]

Thank you for your reply. What does Testosterone specifically for you? Helpful with fatigue? What are riskz?

How much (Milligrams or whatever measurement) of the Primadophlus Bifidus do you take? I have IBD looks like can help with that. How long did you take it before you saw benefits?

[SusieW2 in reply to harmony2]

I had complained of fatigue and that yoga was getting harder to do rather than easier over time. Testosterone helps to build and maintain muscle when you exercise. I think this boosts metabolism so you get more energy from food. I slept better after starting it and had mucho more energy. Its a small does and is now, because I tolerated it, mixed with Progesterone. I have my levels checked annually.

He also prescribed a low dose of a thyroid supplement which also addressed my fatigue.

There is a very slightly higher risk of breast cancer with the testosterone as there is with any hormone supplementation. I think. Most Drs. won't prescribe it for women because there haven't been a lot of tests on it. I'm starting year 4.

The brand of probiotic I take is Nature's Way. You take one a day and its OK for vegetarians. It contains:

Bifidobacterium breve **

Bifidobacterium longum **

Lactobacillus rhamnosus **

Lactobacillus acidophilus

[harmony2 in reply to SusieW2]

O crud. Just wrote a long reply. Got distracted then shut the wrong tab on my browser. Sorry. Don’t have it in me to re write. Thank you for your detailed reply. Nature’s way have so many but found yours with details you provided. Thank you. Will explore things that you mentioned and continue to exercise-physio in a.m., walk in p.m., tho am very very slow!