Dry mouth

[Elizka]

Hi,

I'm on Besremi, now at 150 every two weeks (down from 180 as WBC got too low).

I have had dry eyes for awhile, but suddenly I'm noticing my mouth is really dry. I also have frequent urination, and have had for sometime which is driving me crazy. I do see urologist next week about that issue.

Blood work still looks as it has with the exception of lower WBC.

Has anyone noticed dry mouth on Besremi?

[EPguy]

I didn't have that effect. But it is documented in the label, sort of backwards here, dry mouth is a common cause of tooth and gum decay:

"Tooth and gum (periodontal) problems: BESREMi can cause tooth and gum problems which can lead to tooth loss. BESREMi can also cause problems with dry mouth that can damage your teeth and the lining of the mouth during long-term treatment with BESREMi. It is important for you to brush your teeth well, two times each day and have regular dental examinations during treatment with BESREMi"

besremi.com/

--

However many if not most other meds have dry mouth listed too. Frequent urination is also possible from other meds. So you should confirm any other meds you might be on.

Less likely is acquiring Sjogren's or other autoimmune as I did from Bes and vax. Dry eye and mouth are key aspects of this condition.

But your note on frequent urination (is it since starting Bes?) along with the above may be worth some follow up as highlighted here:

"New or worsening autoimmune problems: BESREMi may cause autoimmune problems (a condition where the body’s immune cells attack other cells or organs in the body),... Tell your healthcare provider if you have tiredness, are urinating often, or if you are very thirsty."

[Elizka in reply to EPguy]

I was thinking about Sjogren's given your experience and when I read the ""New or worsening autoimmune problems" section again today. Somewhat reassuring you didn't have dry mouth. What was your first symptom?

Yes, frequent urination since Besremi, or the last year. Dry eye which I didn't realize I had until I saw eye doctor recently and was dx, but using drops 4x a day has actually made my eyes feel better.

Dry mouth came out of no where the last few days.

I reached out to PCP and HEM tonight asking for referral to kidney doctor. Urologist already booked. I'm religious about teen brushing 2x a day, flossing and using a water pic.. Also getting six month dental check ups.

Thanks!

[EPguy in reply to Elizka]

Dry(er) mouth in an literally a few hours was my route to the full Sjo Dx. But I didn't get obvious dry mouth till the post vax-IFN mess was already several months old.

With your current experience it might be good to see a rheum and meantime have your PCP order an immune panel including SS-a, RF, ANA, CRP, sed rate, etc. I can provide what I got if you are interested. It was 17 vials

Same here on dry eye, I still don't feel it. You can get a Schirmer's test at the eye Dr to quantify it. I failed it. For dry mouth there are two meds we use, Pilocarpine and Cevimeline. It would be Rx by a Rhuem usually, I don't know if they use it for non-Sjo pts, but it's a life saver for me.

[Elizka in reply to EPguy]

Thank you! As I shared I moved up my HEM appt to Monday and also scheduling appt with Rheumatologist.

[hunter5582]

I have not experienced dry mouth, but dry mouth is one of the adverse effects known to be associated with Besremi.

BESREMi can also cause problems with dry mouth that can damage your teeth and the lining of the mouth during long-term treatment with BESREMi. besremi.com/safety/

There is also a warning about dry eye with Besremi

During BESREMi therapy, 23% of patients were identified with an eye disorder. Eyes disorders ≥5% included cataract (6%) and dry eye (5%). besremihcp.com/

I also experience significant dry eye, but it predates going on Besremi. I have tried OTC eye drops, Restasis, and Xxidra without success. What did work was Cequa, which has been very effective.

I believe there are a number of conditions that can include both dry mouth and frequent urination. They can, of course, also be unrelated. Prompt follow up as planned is a good plan.

Please let us know what you learn and how you get on.

[Elizka in reply to hunter5582]

I got a prescription for Cequa as you suggested, but my insurance refused to pay for it. Honestly, I'm happy they pay for Besremi, Nurtec, Aimvoig and Eliquis each month so I didn't push back.

[hunter5582 in reply to Elizka]

They may require you to fail on the other formulary options first. Restasis does work for some. Xxidra is a newer med. May also not be covered. Hope you find one that works.

[Dottiedot]

Hi Elizka Sjogrens popped into my head when i read your post. I haven't used besremi however I was on peg interferon and then diagnosed with sjogrens whilst taking it. May be worth asking your gp to run blood tests for this

[EPguy in reply to Dottiedot]

To Dottie:

How is your Sjogren's lately post PEG? You can see my posts that I was hit hard with it while on Bes with a vaccine trigger.

[Dottiedot in reply to EPguy]

Morning it's strange really as some days are worse than others and it sort of feels like it's just another symptom and part of pv and just another thing to deal with I did get an opthalmology app where they advised to use a heated eye pack for 10 minutes a day and a particular eye drops but waiting for my rheumatology app as it got cancelled due to the strikes in the UK ...however the issue I have at the moment is my platelets rising they have taken a while as its now been a year since off peg and just taking an aspirin so I gave to make a decision on hydrea which I really don't want ... I just know I will get every side effect possible

[EPguy in reply to Dottiedot]

Sjo is alot about good and bad days, even more than MPN. Yesterday I spent in bed today it's like nothing happened.

I think UK does not easy have access to Rux, is that right? Jak inhibitors are used for some Rheum conditions these days. So it might help the autoimmune condition as well as your blood counts if there is a way to get it over there.

[Bill209]

Try using Biotene toothpaste and mouthwash to help with the dry mouth and/or sore issues. Biotene also has a mouth spray that can be used while traveling.

[monarch5000]

I had dry eyes/mouth/hair/skin on Besremi after being on Pegasys interferon so I switched back to Pegasys. Pegasys is far less costly too:

[Elizka]

Thank you. My insurance covers Besremi completely.