best products

[BonnyB]

Hello,can I pick your brains please.

recently diagnosed with sjorgrens.after a fight my drs gave agreed to supply some products on prescription. My first trip to the pharmacy cost me £50 and I top of this I purchase eye drops online and pay for my prescription for hydroxy.

The drops I buy online are hycosan extra .02% hyaluronic. Chemist given me Hypromellose .03 % W/ V. Anyone know which are stronger?

I wake up with my eyes stuck together,read about a night gel,rather than drops to put in before sleep.Any recommendations?

Finally, pharmacy gave me xerostom gel(artificial saliva) the product has helped.but it's in a tube that rub on with your finger , which is OK for home but not so easy when I need to use it when I'm out. Anyone used a spray?

thank you in advance

[BonnyB]

Forgot to say I now have the prescription plan in place on pay monthly.

[Oshgosh in reply to BonnyB]

Sorry only just noticed this post x

[Oshgosh]

I have Sjogrens,after trying a few prescriptions for eye drops,I found that Clinitas carbomer gel.It suits me.

As I get one tube a month, I buy some from the rain forest,

Put viscotears in the search.

If you ask the pharmacist about a “ season “ticket for prescriptions .I’ve forgotten the official name.

Saves you lots of money.

[BonnyB in reply to Oshgosh]

Thank you so much x

[ATVMWF in reply to Oshgosh]

HI Oshgosh, I think Viscotears is now out of manufacture and has been replaced by Celluvisc, at least that what my local hospital told me last week....

[Cas70 in reply to ATVMWF]

I have used Celluvisc for 7 years to great effect. Biogtene for dry mouth or Xylimelts which can be inserted in mouth or suck a sugar free mint.

[ATVMWF in reply to Cas70]

Hi Cas70,

I have tried all 3 but don't like the Xylimelts much myself, although, I know many get great relief from them. I suppose it is trial and error to see what suits you best.

I just keep my fingers crossed that all these research papers you hear about eventually come up with some good treatments, or better still, A CURE!

Take care,

ATVMWF

[ATVMWF]

Hi Bonny,I don't have Lupus but do suffer from Sjogrens as well as several other autoimmunue conditions.

I have been prescribed several eye drops to assist with the dry eye issues that come with having SS. They are; Ikervis (Cyclosporin- possibly only available from G.P. after recommendation from a consultant from eye hospital), Celluvisc, Clinitas and Hylo Night gel via G.P. on a prescription.

Hope this helps,

ATVMWF

[BonnyB in reply to ATVMWF]

I'll be looking these up. Thanks for your reply xxx

[Looplylady]

Yes i have Glandosane spray lemon flavour from gp, I don't really think it makes much difference but worth a try, I tend to buy Jackmans sweets as they are soothing & come in many flavours.

[BonnyB in reply to Looplylady]

Thank you. I do like lemon taste, will have a look x

[baba in reply to BonnyB]

I was told by an oral surgeon that Glandosane is detrimental to natural teeth.

[Cwmtaf in reply to Looplylady]

I am well into Jakemans sweets too. Really help dry mouth.

[BonnyB in reply to Cwmtaf]

Yes I like the honey and lemon& cherry. X

[Spanielmadlady]

Hi.i get salivix pastilles on prescription.pleasant mild fruit flavour and sugar free.easy to put in a bag or pocket .eye drops wise I'm prescribed hylofotre x

[BonnyB in reply to Spanielmadlady]

Thank you , much love x

[Cwmtaf in reply to Spanielmadlady]

Ah - I will try Salivix pastilles. Much better to go sugar free I reckon. Thanks.

[AliDeJ]

There is a specific Sjrogrens society online which may be able to help more.

[BonnyB in reply to AliDeJ]

I came across something yesterday on here. Then lost it. Will try again later. Thank you x

[OldTed60 in reply to BonnyB]

There are communities here for sjogren’s but they aren’t as active and one is Australian - may have different brand names? The UK charity is called BSSA but not much social media presence. Great helpline and mags though. Guessing you’re as well asking stuff here. I use Hyloforte drops and Hylonight ointment on prescription. I also have a heated eye mask daily which is plug in - brilliant- I learnt about this here! Mycophenolate seems to have helped my eyes a lot. Mouth I suck various sugar free all day long bcos horrible taste from dryness. Worse for me than eyes.

[BonnyB in reply to OldTed60]

Is mycophenolate a medication? I'll look bssa up tgank you x

[OldTed60 in reply to BonnyB]

Yes Mycophenolate is quite a strong immunesuppresant - an anti rejection kidney transplant drug used to modify more severe cases of rheumatic autoimmune diseases eg Lupus, Vasculitis, Systemic Sclerosis, Myositis and sometimes, Sjögren’s. I take it at highest dose to prevent further progression of organ involvement. But a brilliant by product of taking it is that it’s apparently really helped my corneal inflammation.

[Krazykat26]

I use Hyloforte eye drops n Xalin nighttime gel both on prescription. My doctor did originally prescribe hypermellose drops but I didn't find they helped much..too thin n watery for my liking n they seemed to make my eyes dryer. 💜🌈😽😽Xx

[BonnyB in reply to Krazykat26]

Thsts exactly how I've felt. We were on holiday when I opened them. Couldn't find any info on contact lenses use so popped into a chemist there. He said it fine to wear them but pointed out that tge drops I get on prescription and any where near the strength I buy online. Think ivecread about xalin use on here before. Thanks so much xx

[CecilyParsley in reply to BonnyB]

Hi Bonny, I was on hypromellose for years, then viscotears neither made much difference. My eyes would be stuck together and burning every morning and gritty all day. I was referred to an Ophthalmologist who put me on Hylo Forte four times a day. It has made a significant difference. Worth trying definitely. He told me when it first came on the market it cost about £100 a bottle but now is more like £14. You can try it from Amazon or similar first then if it works for you get it on repeat prescription. Good luck xx

[BonnyB in reply to CecilyParsley]

Thank you. Yes I'll order some and go from there xthanks x

[dg70]

Go to gov.uk and search NHS prepayment certificate. Costs just over £100 per year but if you have regular medications it's worth it. Make sure you follow eye drops with activist spray to help keep the tears in with the oil film it produces. Try a USB heated eye mask once or twice a day for 10 mins. Keep your eyes and lashes clean each day with eye wipes . If using a computer remember to blink or close your eyes regularly to stop your eyes drying out. Wear wraparound glasses outside to stop the wind drying your eyes out and uv light irritating them. Hope that helps. 👍 that's just the eyes, mouth and other places is a whole new subject. 😃

[BonnyB in reply to dg70]

Thanks fir your time and advice. Oh yes, the Dr had a great sense of humour when he explained every orifice in my body is dry 😃

[dg70 in reply to BonnyB]

Yes it really is a drought all over. 😂 make sure you get a good ophthalmogist who understands sjogrens and get regular eye advice. I go once a year as I'm on hydroxychloroquine too. Pilocarpine is what my rheumatologist prescribes to help produce moisture all over and for me it works great. I only need eye drops about 3 times a day now and don't crave water every five mins. Down side is you get a hot flush for 20 mins after taking it but benefits outweigh the losses. Hope you manage ok. Read up on everything. Watch the bssa videos, especially dr price, you can't go wrong. So glad you have a good doctor it's a real bonus and a sense of humour helps. 😀

[BonnyB in reply to dg70]

Yes I'm on hydroxychloquine. Although I've lost quite a bit of weight, intentionally at first but due to this dryness I'm not eating half as much, think my dose may need to be lowered. I'll look that up aswell. Thank ypu x

[Tykle]

I found Ikervis the thing that really worked well. I had to stop them due to skin irritation and haven't found anything as good since.. Now I find Ilube quite good and hylo night and hylo forte help too.

[BonnyB in reply to Tykle]

Thank-you xxx

[baba]

Re prescription prepayment:

services.nhsbsa.nhs.uk/buy-...

[BonnyB in reply to baba]

Hi, I set this up the other week after my expensive trip to the harmony when I bought tge products over the counter.Had a terrible job getting go to prescribe what I need though. I'd asked for artifice tears and saliva. Mouthwash and replens fir vaginally dryness( thinking this may be why I keep getting water infection) .

The gp phoned, said it needs to be approved by someone, and will take a couple of weeks. Then I had a call saying I can 2 of the items I requested on prescription.

Bit disappointed really but I'm hoping my rheumatology app is soon and she will write to my gp x

[Pippydo]

Hi, I’ve suffered with Sjorgrens for many years was told in the early days contact lenses were a big no as danger of corneal ulcers as eyes so dry. I’ve plugs in my tear ducts which certainly help. I had left parotid gland removed so have extremely dry mouth and dental problems as a result, artificial saliva and sugar free gum help. Hydroxychloroquine seems to prevent flare ups. Really hope you find the right products, trial and error I think!

[BonnyB in reply to Pippydo]

Thank you. Yes, I think the I've been given the cheaper products but I'm going into the pharmacy today. Need to get this sorted. Xxx

[Cal48]

Theoloz duo are better I get these on prescription and also Xailin night ointment to use before going to sleep.That help me quite bit.

[BonnyB in reply to Cal48]

Thank you x

[chrisj]

I buy Oralieve sprays for my mouth, the reliefs instant and you can use it as often as you need to. Not cheap and its fairly small but worth the money for me.

[weathervane]

I was advised to use high fluoride toothpaste Durahat 5000 , I tried sprays unsuccessfully, biotene gel suits me better. For my eyes i use hyloforte drops very regularly all day , i have a heated eyemask but i find a warm facecloth is handier and I massage my eye lids when its on. I think everyone is different though and you have to find what suits you . I live in NI and our prescriptions are free thankfully as I would be out a fortune with the bag of meds i get 🙄xx

[Onedge]

Hi BonnyB,Ive had numerous eye treatments. I did have viscotears ( recommended by a private consultant) but it ended up worse for me as I need all eye treatments to be preservative free.

I use Ikervis drops at night followed by Hylo night vitamin A cream. I use liquifilm tear drops through out the day. I also use Thealoz duo drops in the morning. All preservative free. I Bath my eyes with cooled down boiled water every morning . This regime works for me.

Hope you get your relief soon

[BonnyB]

thanks to everyone that replied. Ive finally had some joy. A lovely pharmacy technician called from my gp practice . Shes going to look into everything, discuss my prescription with a gp and promised to get me some relief. She said itll take some time to try different products, which i understand and am happy to do.

Thanks you lovely lot x

[Katrina999666]

Punctual plugs help immensely and hyloforte eye drops