Experiences with

Sjogren-Larsson syndrome

I have had PBC since 2000 and coped well so it didn`t stop me doing anything I wanted to do. 10 years ago I was diagnosed with Sjogrens because of symptons I had at that time. 9 years passed without a worry but last year I started with Sjogren problems. It is now difficult to work out whether the issues

Question for those using Kevzara: We’re going to be going on a couple of trips and I’m wondering how to deal with my used syringes. What they send me are not the pen type of injection, but a syringe that has ‘finger grips’ that are 1.5 inch wide. They don’t fit in all sharps disposal containers because

Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this

I noticed that some members have both of these diagnosis as well as Sjogrens. No one ever checked my homocysteine level until after I had Complete Heart Block and was implanted with a Pacemaker/defibulator. I have always felt that if the MTHFR was diagnosed before all the other autoimmune diseases, I

Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg

Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .

a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take

I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time

I have my second nailfold infection in 2 months - it is proving difficult to resolve and a few days ago a telangectasia bled profusely for no reason. Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.

I wanted to ask if anyone had to contemplate FET cycle that falls over Christmas? I had failed FET in January it took 12 months to reach this point because I decided to go attend RIF clinic but all the waiting time then treatment to hopefully deal with implant failure has meant my next cycle can start

Part of AI's response to "acetyl-l-leucine anxiety" Elevated lactate levels in the brain can occur with several neurological disorders, including anxiety, major depressive disorder, and Parkinson's disease. High levels of lactate can lower the brain's pH, which can affect neuronal activity and the

Bit of a random question. For the past few days I’ve had painful gums in one area, to the point where I went to the dentist today to get it looked at. She thinks it could be gum related and possibly due to additional hormones I’m taking. I was wondering whether anyone else has experienced this? I’ve

since having a total hysterectomy in 2019 for very early stage cancer which cured it I have developed nagging pain near the perineum which at times feels as if I’ve been kicked in that area. I also developed urge incontinence and changes to bowel function. Recently I saw a physiotherapist who specialised

Hi I hope someone can help. I have been struggling a while, I had a scan which revealed thyroiditis and a small grade 2 cyst. Drs won't give me any support as bloods are normal. I went back again, after prodding and poking my neck which was uncomfortable suddenly I am on the pathway for throat cancer

Hi All, I just found out last week my first FET failed. I couldn't get my lining up above 6.3mm and the clinic were happy to go ahead as I had a lovely triple line and even during my egg collection my lining only made it to 6.8mm. I was taking pomegranate juice and l-arginine throughout to hopefully

Hi i would like to know if anyone alsof experiencing extreme lockjaw, tetanus with fnd? I have this for several years and i was diagnosed with fnd last year. Symptoms spams, tics, walking difficulties. But i try to find out if the lockjaw was an early sign.

I want everyone to have the choice of trying anything they like - so long as they are fully informed and all information is readily accessible. Trouble is, a lot of information is hard to access for many reasons including language, paywalls, time, and having the required time and skills to get to the

As you all know I have been on low dose buprenorphine tablets for one year & I simply cannot believe I have been free of the dreaded RLS for 12 whole months after 40 years of suffering.However, as we have all discussed I am invariably wide awake during 🤨the night & by the afternoons I simply have to

I wondered if anyone has applied for pip. My auto immune thyroiditis caused me to leave my career in nursing . As my intermittent brain fogs caused me to worry I would make a mistake . Thank fully I left before I did. I now find I can only work part time and I work from home 15 hours minimum wage .

when I have a GCA flare 3 months later my hair comes out and grows back really dry and I cannt do anything with it . I went to a dermatologist who recommended , I take viviscal hair tablets ( not cheap) biotin tablets and then on prescription extrovex shsmpoo. Plus every other night I go to bed with