Drugs to treat Sjögren’s

[rosserk]

Hi all

I’m currently taking Hydroxychloroquine 400mcg

I have been offered Azathioprine or Mycophenolate.

My Consultant is concerned that my enzymes are a bit low for normal dose of Azathioprine so has offered me a lower dose or alternatively he says I can try Mycophenolate.

I’ve looked online and can’t find any stats that show either of these are successful at treating Sjogrens so I am wondering if either is worth risking.

What are others taking and is it working for you? I really don’t think my consultant has a clue he basically told me I had to live with it and only offered the above drugs when I burst into tears!

[garlich_ligeia]

Hi Rosserk,

I have SLE Lupus , Sjogren's Syndrome, and Polymorphic Light Eruption (PMLE). I was diagnosed with lupus back in 2001, and I was diagnosed with sjogren's in 2018, so I have secondary sjogren's. I take azathioprine (50 mg) and hydroxychloroquine sulfate (200 mg) daily. I am on a low dosage of azathioprine because I have a history of blood disorders (lupus related), including low platelets. These drugs help me a lot. My lupus is currently "quiet" (not a true remission), but the Sjogren's is active. The symptoms of my lupus and Sjogren's are almost identical, with the exception of the dry eyes & mouth. Even though these drugs won't cure these diseases, I think that it is worth looking into. I had a horrible doctor in the past who took me off of the azathioprine, and all of my lupus/sjogren's symptoms came back full force (including new symptoms that I didn't have before). I found a new rheumy who was appalled that my old doctor took me off of the azathioprine. I think you should consider finding a new doctor and also trying the azathioprine along with the hydroxychloroquine.

[rosserk in reply to garlich_ligeia]

Hi thanks for the reply. It helps to know what experience others have had.

[Yllek]

Hi

I’m not diagnosed with Sjogrens yet but I do have CNS APS and we’re currently looking at the possibility that I also have sjogrens. I’m actually seeing Dr Price in Swindon UK tomorrow who is a top specialist in this field.

I tried azathioprine for my symptoms but I’m also a carrier of TPMT so it never worked and I was very sickly.

I’m having a new brain Mri in a few weeks and as soon as that is done I am starting mycophenolate.

So I’m not sure if this reply helps but these are the drugs they’re using on my to try and control CNS issues. I also take 400mg of hydroxychloroquine daily for the last few years.

Kelly x

[Sekka in reply to Yllek]

Please post the results of your visit tomorrow. I am most interested. Hope it will be helpful for you...

and us! I have Schogrens amongst other stuff.

[Yllek in reply to Sekka]

I will do! X

[rosserk in reply to Yllek]

Thanks for the response. I am thinking of seeing Doctor Price privately but worried it will be a waste of time and very costly if my experience with experts so far is anything to go by. Please let me know how you get on with her today.

[Yllek in reply to rosserk]

I saw Dr Price yesterday and she’s as good as everybody says.

I’m an unusual case and she did say I’ve probably got Sjögren’s as well as my already diagnosed APS.

She has said my symptoms are most likely cranial neuropathy from the symptoms and short video I showed her and she has never seen it like this before and says she has only heard of one man in Scotland who has a 12th nerve palsy from Sjögren Syndrome.

I’m already starting mycophenolate as prescribed by the neurologist but she would consider biologics such as rituximab in me due to the severity of neurological symptoms - I am actually seronegative as well.

I can’t have a lip biopsy as I’m on warfarin so she’s sending me for a scan on my glands to see if that shows anything. She’s also getting in touch with the head of the London Lupus Centre to discuss my particular case as it’s very rare.

All in all I came out extremely pleased with what she had to say and how genuine she was.

[rosserk in reply to Yllek]

That’s brilliant new really pleased for you. I’ve booked my appointment for the 10th of June. Will you have to pay for the additional tests she’s ordered and will you have to return to Swindon to have them?

My initial appointment is a private one because I couldn’t get anyone to refer me. I already have a confirmed diagnosis so not sure I would need additional tests. My doctors here really don’t have a clue!

[Yllek in reply to rosserk]

She’s referring me to a colleague in Liverpool for the scan so I can have it done locally.

I’m sure you won’t be disappointed. Keep in touch and let me know how you get on x

[rosserk in reply to Yllek]

Do I need to take any information with me? My memory is rubbish and I always come away forgetting to ask things and forgetting everything they’ve said ! Lol

[Yllek in reply to rosserk]

I wrote down a timeline of symptoms and a list of questions x

[weathervane]

Hi rosserk , i was started on rituximab infusions over 2 years ago and they have really helped with lymph node swelling, muscle and joint pain as well as decreasing the general dryness a bit . Its not a cure but it has given me my life back as I wasn’t able to function. Best wishes

[rosserk in reply to weathervane]

Thank you! I am going to go private to see Elizabeth Price in Swindon I will mention it then. Don’t think I’ve ever had any lymph node swelling. I’ve had dozens of really high liver enzymes with no explanation given as to what’s making them go high. I assumed it was Sjogrens but I don’t really know. My mouth and eyes are unbearable it’s not a life worth living if I can’t get it sorted. 😒

[weathervane]

Good luck, will be really interested to know how you get on xx

[rosserk]

Thank you I will definitely let you know xx

[Blogg]

I have methotrexate and hydroxychloroquine as I also have rheumatoid arthritis it works well for me in combination.

[Sekka in reply to Blogg]

I need to give up Mobic (for my RA) until the confirmation or not of an ulcer. I just read that methotrexate may help my Schogrens as well as my RA so maybe I should seek an appt with my rheumatologist to discuss it?? Any other suggestions?

[maggielee]

Hi I am glad to hear that you have booked to see Dr Evans in Swindon, she is up-to-date on research & having chaired the BMS Guidelines for SS & Trustee of BSSA she will be very helpful. If you can get any info to her prior to the appt. can help, I always bring a copy too., recent bloods or specialist notes or other tests. I give her a summary page of current meds, diagnosises, symptoms....photos if needed of skin conditions or gland swelling...

If you want to keep up with her reading the SS guidelines will help...she does write to you after the appt. with recommendations (I take quick notes too).

I am currently diagnosed with Sjogrens (primary), SCLE (1st appeared) & various other issues. I take 200mg hydroxy & 1g mycophenolate (both take time to help & adjusting to new meds). I eat food with both & drink plenty of fluids & due to SCLE I avoid UV as much as possible.

Have a good appt. & hopefully you will find suitable meds for you.... ML

[Jora]

I have Sjögren’s, secondary to RA which is proving difficult to treat and has led to Interstitial Lung Disease, which is now my greatest concern; the prognosis is not jolly. I ‘ve never been prescribed any drug for Sjögren’s, but swear by Xylimelts, especially at night. During the day, sometimes it’s so bad that I can’t swallow or talk properly.

I don’t know if that helps.

[rosserk in reply to Jora]

Hi Jora

Thank you for the reply. I already use xylimelts they are really good but extremely expensive due to the amount I need to use.

If you think sjogrens is the cause of your lung problem you should really try and get some type of treatment. I’m not familiar with the best treatment for sjogrens yet but I do know there are lots of people on this forum who’ve been helped by different treatments. Sjogrens is multi-systemic and can seriously effect the lungs and other internal organs if left untreated.

Kindest regards x

[Jora]

Mmm. I haven’t seen anyone specifically about Sjrogrens, except a brilliant respiratory physio (NHS) who comes to the house. I nebuliser several times a day and also use an acappella vibratory device and have some special exercises. They don’t believe the SS caused the lung disease, but makes it much harder to clear the airways because of the dryness. I see the specialist soon and will discuss it with her.

Yes, xylimelts are expensive. I tend to use them at night and Sallivix and nast sprays during the day.

Thanks for your advice.

[rosserk in reply to Jora]

Good luck I hope you get better soon

[bp21]

Hello Rosserk, I am a pale skinned Aussie who was on Azathioprine for six years.

I have a few Autoimmune conditions including MS, Sjogrens, RA, and SCLE .

Any Dermatologist will tell you not to use Azathioprine as the side effects on your

skin are terrible. I have had BCCs removed from all over my face, ears neck in recent

years which were all said to be accelerated by the Aza. It did seem to suppress my

SCLE but no real effect on my Sjogrens.

I am now taking Hydroxychloroquine and a small dose of Prednisilone daily but all

of my symptoms are still around and surface from time to time.

I'm 64yo but if you're younger you don't want BCCs appearing everywhere.

Good luck but I would mention this to the specialist.

[rosserk]

Thank you for taking the time to respond. What are BCCs?

[bookish in reply to rosserk]

BCC = basal cell carcinoma. Linked to autoimmune conditions, whether treated or not.

[Nousernames]

I've been on Hydroxychloroquine for several years now. I quit taking it a few years ago thinking would help in my hair from falling out.

It didn't, and my joint pain escalated.

My rheumatologist has advised me the only other option is methotrexate and folic acid.

I filled the prescriptions and I even had my labs done. Then I decided not to start the meds.

I read the side effects and I am afraid of the side effects. Mainly increased fatigue.

I live alone and have to take care of everything myself.

If I had anyone to help, I would start the methotrexate.

Now I am about as sick as I have ever been.

I'm so frustrated with the lack of education the rheumatologists have on our disease.

Everyone gets Hydroxychloroquine because in my opinion, the doctor's I've seen don't really care.

I only say this because I feel like once they have a steady practice, they are not going back to further their education on autoimmune disease.

I was a hairdresser and I was always attending different classes to be educated on new products and different cuts.

I wish you well, and I am sorry I don't have any good advice, and not for a lack of trying to find help.

I have seen allot of physician's, and they all have the same treatment.

This has been like a nightmare.

The Sjogrens foundation keeps asking for more money for research, but I'm still waiting to see a change.

I really wish I had the energy to do something about this problem, but my fatigue is so bad I barely have the energy to get out of bed.

I have never heard of the two medications you have listed.

I'm always online in attempt to find something that works.

I can only tell you what I would do, and that is to see another doctor.

I wish you and everyone with this horrible disease the best.

June

[rosserk in reply to Nousernames]

Hi thanks for taking the time to reply.

The fatigue I’ve had over the last few days has been so bad I can barely walk more than a few steps. It’s like I’m trying to walk through wet concrete!

I have an appointment on Monday with Dr Price I will let everyone know how it goes and what she recommends or prescribes. One of the main problems is getting other people to believe how debilitating it actually is when there’s no outward signs that they can see! I’m sure everyone thinks I’m exaggerating or worse making it up!

I’m sorry you’re alone dealing with all this it must be horrendous for you, I can’t imagine how you’re coping! Big hugs 🤗

Xx

[Legored11]

Been there with the fatigue. Its awful. I have Sjogrens and Antisynthetase. Rituximab was my saviour. Now almost symptom free except dry eyes and a few aches and pains.

[rosserk]

My eyes are really bad I’m using night time gel throughout the day so my vision is always blurred I’m hoping to get punctual plugs. I read rituximab was an option and I was hoping to hear from someone who was taking it. I’m going to add it to my list if questions for when I have my appointment with Dr Price. Thank you for taking the time to respond. Xx

[rosserk]

Hi all, sorry for the delay in reporting back about my visit to Dr Price but I’ve had a death in the family and couldn’t motivate myself to do anything. I’ve got a few minutes spare so I will give everyone a quick run down.

Dr Price was lovely very knowledgeable and extremely understanding.

She is prescribing Mycophenolate and some different eye drops, she said the drops I was given were less than useless! She’s also prescribing something else that begins with a P but can’t for the life of me remember what it is! If I remember I will update!

I haven’t t had my consultation letter through yet so haven’t got my prescription yet! She said the red palms were likely due to liver problems because I’ve had several results where my liver enzymes were raised which could be caused by sjogrens attacking the liver but she couldn’t be sure.

She gave me two really good pieces of advice the first was to get an eye mask that you put in the microwave. You have to use I at least three times a day to start with for a minimum of seven minutes, she was very specific about it being no less than seven minutes. I bought one straight away and it’s amazing my eyes are so much better. It’s supposed to melt the natural oils in the eye which then lubricates the eyes.

The second was xylitol natural sweetener to add to water which helps to stimulate saliva and also works brilliantly! My mouth which is usually red raw and feels and looks like it’s been through a cheese grater is 100% better. It doesn’t cure the dryness but it prevents it getting raw. You can buy the eye mask and xylitol from Amazon. She also advocates using xylimelts, which I was already using.

Until I start all the new medication I won’t know how successful the treatment is but I am really hopeful. 😁 I will update again when I start the meds! Hope everyone is doing well!

[Jora]

Poor you. I have very bad SS too and can empathise. People seem to think it’s unpleasant but not serious, but in my case it has been a contributing factor to my progressive Pulmonary Fibrosis as my airways have been too dry to bring up stuff. I’ve never been offered any drug but I assumed that MTX might have helped a bit as SS is an autoimmune disease.

The cruel irony is that whilst i’m bone dry inside, the steroids make me sweat profusely on the outside. When I went into a shop the other day, a woman said “Oh I didn’t realise it was raining” as she saw me soaking wet from the head downwards. When she realised her faux pas, she was even more embarrassed than me, I suspect.

I’m going to ask my consultant about the drugs you mention when I see him next month.

Good luck. Nora