Author Topic: Treatment for SS fatigue on its way!  (Read 1211 times)

Sharon

  • Hero Member
  • *****
  • Posts: 1320
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

bluegardenia

  • Hero Member
  • *****
  • Posts: 648
Re: Treatment for SS fatigue on its way!
« Reply #1 on: June 19, 2019, 03:04:10 PM »
great news!!!!lets hope they are right and quick
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

markt

  • Full Member
  • ***
  • Posts: 203
Re: Treatment for SS fatigue on its way!
« Reply #2 on: June 19, 2019, 03:11:43 PM »
Cool, that trial is certainly noteworthy.

I look forward to the publishing of results for the phase I/IILacripep trial (this fall I believe).

Also watching for Novartis' Ianalumab (VAY736), which is along the lines of Rituximab, which has been extensively trialed in Sjogrens.

Looking forward to more options and better control of symptoms; we are lucky to be in an era where immunotherapy is being developed/matured.

araminta

  • Sr. Member
  • ****
  • Posts: 388
Re: Treatment for SS fatigue on its way!
« Reply #3 on: June 20, 2019, 10:42:04 AM »
Thanks for posting.   Fatigue is the worst symptom for me.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Maria3667

  • Hero Member
  • *****
  • Posts: 787
  • Cultivating a 'dry' sense of humor.
Re: Treatment for SS fatigue on its way!
« Reply #4 on: June 23, 2019, 03:23:54 AM »
Interesting & promising study! However it mainly targets fatigue, by which 70% of patients are afflicted, whilst 100% are afflicted by dryness issues. True, I also (had) fatigue, but managed to obliterate it with thyroid hormones.

Wonder how much it does for our dryness issues?
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

Gorn

  • Newbie
  • *
  • Posts: 39
  • Also known as Kevin
Re: Treatment for SS fatigue on its way!
« Reply #5 on: June 23, 2019, 08:40:10 AM »
FDA says it is typically one to two years after stage III trials are complete to bring a drug to market.

https://www.fdareview.org/issues/the-drug-development-and-approval-process/

Sharon

  • Hero Member
  • *****
  • Posts: 1320
Re: Treatment for SS fatigue on its way!
« Reply #6 on: June 23, 2019, 03:44:38 PM »
markt- This med is also unique in the sense that it does not compromise the immune system.

Gorn- True, the downside of these new meds being developed specifically for SS is that we will indeed have to wait for them for quite awhile.

Maria- I wonder that as well. It is supposed to target SS inflammation so I would suppose that means dryness as well, but no info on that aspect yet.
Were you ever diagnosed with thyroid issues or was it sub-clinical?

Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Maria3667

  • Hero Member
  • *****
  • Posts: 787
  • Cultivating a 'dry' sense of humor.
Re: Treatment for SS fatigue on its way!
« Reply #7 on: June 24, 2019, 10:52:35 AM »
Hi Sharon,

This has always been an enigma for me. At diagnoses with Sjogren's, I also suffered from debilitating fatigue (sleeping up to 16 hours (!) a day, always freezing, excersize span of max. 10 minutes).

For 15-plus years blood work (including anti-TPO) was within range. As physicians denied thyroid involvement and couldn't cure my fatigue, I turned to a naturopath who did a '24 hour urine test' determining TSH was too high & conversion of T3-T4 too low. Thyroid hormones (natural dessicated + T4), made the fatigue dissapeared like snow before the sun.

Then out of the blue in 2016 a blood test showed my T4 was too low whilst I was on thyroid hormones already!

So had Sjogren's somehow camouflaged hypothyroidism all these years? Why did it suddenly show up? I'm guessing peri-menopause was somehow involved...
« Last Edit: June 24, 2019, 02:20:42 PM by Maria3667 »
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

Sharon

  • Hero Member
  • *****
  • Posts: 1320
Re: Treatment for SS fatigue on its way!
« Reply #8 on: June 24, 2019, 02:38:30 PM »
So interesting Maria...!
I would be willing to give anything a try.
Are thyroid hormones available by prescription only?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Maria3667

  • Hero Member
  • *****
  • Posts: 787
  • Cultivating a 'dry' sense of humor.
Re: Treatment for SS fatigue on its way!
« Reply #9 on: June 25, 2019, 12:09:03 AM »
These medicines were a godsend for me. Gave me a new leash on life! Yes, by prescription only. Either via specialist, GP or licensed naturopath. And you'll need regular blood testing to make sure TSH doesn't fall too low and/or T4 (and T3, but they usually only measure T4 as T3 converts to this) too high.

Good luck!
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

Deb 27

  • Hero Member
  • *****
  • Posts: 762
Re: Treatment for SS fatigue on its way!
« Reply #10 on: June 26, 2019, 03:55:38 AM »
A med that would help inflammation and fatigue sounds like a dream come true. The big thing with new meds is that insurance companies are slow to cover them. Being a retiree, the only way I can afford restates is with a coupon. My doctor prescribed a new antidepressant that was supposed to be $30 a month with a coupon but it was actually $130!!! So, that is off my list. I am just glad that I don't have to take insulin!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Gorn

  • Newbie
  • *
  • Posts: 39
  • Also known as Kevin
Re: Treatment for SS fatigue on its way!
« Reply #11 on: June 29, 2019, 04:07:47 PM »
Don't mean to sound like a Negative Nancy.

I am really encouraged by this, and that fact that drug companies seem to think Sjogren's is a worthwhile target for therapies.
Just wish it could come sooner...

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13463
Re: Treatment for SS fatigue on its way!
« Reply #12 on: June 29, 2019, 09:11:55 PM »
Thyroid meds cannot be taken without a prescription which is good. The thyroid is an unbelievably complicated gland that controls or has impact on every portion of the body. It is very hard to keep things in order when trying to straighten out a screwed out thyroid. It is amazing that much of the time the gland does its job very well without any help.

It controls heat control, anemia and blood issues diabetes, gets involved in just about every other gland in our body. The ovaries are hugely influenced. I is easy to test and if you think your could be having some issues make sure your doctor takes you seriously.

I had a screwed up thyroid for about 5 years and no one checked it. I had to move out of state and see a new doctor to have a TSH and get put on thyroid meds. I had low thyroid and didn't get cold but my hair got so coarse and I just didn't sleep good. Take care. Irish

Sweetcheex76

  • Jr. Member
  • **
  • Posts: 91
Re: Treatment for SS fatigue on its way!
« Reply #13 on: July 04, 2019, 12:59:46 PM »
The fatigue was already bad even while using plaquenil. Not that I have to stop, I'm worried about it worsening. This med can't get here soon enough.
Sjogren's, Trigeminal Neuralgia, Reynaud's, Fibromyalgia, osteoarthritis, ocular rosacea, rosacea, endometriosis, ADHD, anxiety, depression, pre-diabetes.

Plaquenil, Cevimeline, Restasis, Metformin,  Vyvanse, Xiidra, prescription ibuprofen, Vitamin D