Gastro-resistant Sulfasalazine shortage?: Hi, I've just... - NRAS

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Gastro-resistant Sulfasalazine shortage?

mjrminor profile image
19 Replies

Hi, I've just signed up to the forum. Nice to meet you all. I was diagnosed with RA in 2017.

Just wondering if anyone else is experiencing a medication shortage right now? Ive been taking a combination of hydroxychloroquine and gastro-resistant sulfasalazine for a year now and was making good progress, but my local pharmacy ran out of the sulfasalazine over a month ago and only have the non gastro-resistant kind, which isn't typically used in RA treatment because it doesn't work in the same way.

I've had to take that for a month now and have noticed a big step back in my pain amd fatigue levels. My pharmacist says there's still no gastro resistant in stock and still no date of when there will be. She says it's a nationwide thing.

Is anyone else experiencing shortages?

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charisma profile image
charisma

Welcome mjrminor!

So far so good for me but I’m on Rituximab given as infusions, months to go till next are due.

Here’s an article that discusses what options were proposed for tackling drug shortages (two thirds of our medication supplies is from the EU): inews.co.uk/news/drugs-shor...

Maybe you could change to a DMARD that is not so difficult to obtain?

mjrminor profile image
mjrminor in reply to charisma

Hi charisma, thanks for replying. My problem is that I also have asthma and before we found a combination of meds that worked for the RA, I'd already tried methotrexate, prednisolone & leflunomide, and they all triggered breathing problems and asthma attacks.

I'll try to get hold of my rheumatologist. I've only seen them once since moving to Somerset last year and had to wait almost seven months to get that initial appointment. Urgh.

charisma profile image
charisma in reply to mjrminor

Pharmacists can call around too, attempting to find the drugs for you. I have experienced that now and then for many years, pre RA too.

Manufacturers sometimes simply quit. When that happened I was prescribed an alternative for my eye drops.

Hope your Rheumatology Dept can help soon.

mjrminor profile image
mjrminor in reply to charisma

Thanks. I'll update here in case it's useful for anyone else.

sinny71 profile image
sinny71 in reply to charisma

Yes I have just been told that there is a national shortage by my pharmacy in Wales and they don’t know when they will get it back in

PinkLamb profile image
PinkLamb

Hi there mjrminor...

Welcome!!!

So sorry that you've joined the RA club...

I haven't had any problems so far re meds...

Have you contacted your rheumatology team about this issue?? I would also inform your GP if you haven't already done so...

I hope that you can get this sorted out ASAP... It's really not acceptable...

I hope that you can get some pain relief soon...

X

mjrminor profile image
mjrminor in reply to PinkLamb

Hi PinkLamb. Thank you. My GP was the one to sign off on giving me the non gastro version as there was no immediate alternative. He's now left and and hasn't been replaced, so still waiting to hear who my new gp is. I did contact the rheumatolgy nurse a week after I had to start taking these new meds, but she didn't seem to know what to do except give it a few weeks and see what happens.

I live in a small town in Somerset, so it seems we're a bit limited with resources.

sunnyweek profile image
sunnyweek

Yes I had trouble locating sulphasalazine 2 months ago. My chemist didnt have any and said he couldn't find an alternative supplier. Fortunately another local chemist had some so the doc wrote another prescription out just for that.

This month my normal chemist had found another supplier. I read that more conditions are being treated with sulphasalazine and was one reason for the shortage. Its a worry I hope you are able to get some soon.

mjrminor profile image
mjrminor in reply to sunnyweek

I'm glad you've got your meds now. My chemist can't get any and doesn't know when they'll be getting more. I called my hospital's rheumatology messaging service today for advice but due to staff shortages the messaging service has been temporarily shut down. I did manage to get a gp appointment for next Tuesday so I'm hoping he'll be able to help me then, or at least point me in the direction of someone who can. It's crazy that any of us should be going through this.

sunnyweek profile image
sunnyweek in reply to mjrminor

Yes I agree it's worrying. it's a good idea to talk to your doctor. Have you rang any chemists further afield. It was Boots here who had some when I rang round. Although my local chemist sourced some last time I'm wondering if I will get any this month.

The best of luck to you.

mjrminor profile image
mjrminor in reply to sunnyweek

Thanks sunnyweek. I've tried the other chemist in town and they don't have any either. Fingers crossed the gp can help.

medway-lady profile image
medway-lady

Oh yes, Cimitidine, Capsicasuim cream, HRT, Flusosamine, and I was told its not because of the Brexit but because the pharma industries are fed up of developing drugs and the NHS then buys in cheaper varieties of the same thing.

I don't know if it true, but in this part of the world hospitals can prescribe 3 months but GP's only allowed to prescribe 1 month. Even if you die if you don't take the medication you can still only get 28 days. It's a joke how much more time does this take for a GP.

mjrminor profile image
mjrminor in reply to medway-lady

Yes there seems to be a lot of a shortages on a wide range of meds at the moment. I read recently about a woman whose epilepsy medication ran out and she couldn't get any for weeks, which then meant she started having seizures. A lot of articles I've read cite manufacturing issues and what you mention about the low cost of meds in the UK, so when there is a shortage the pharmaceutical companies will sell what they have to countries who pay more.

bpeal1 profile image
bpeal1

I got a new prescription for sulphasalazine about 4 weeks ago. I take 4 tablets twice a day and the hospital prescribe 3 months each time so a large quantity and the pharmacy supplied it in full. They did give me a mixture of two different brands but they often switch between the two brands so I wasn’t really surprised about that.

mjrminor profile image
mjrminor in reply to bpeal1

That's great you've been able to get your meds bpeal1. Do you mind me asking which area of the country you live in? I'm in Somerset. My gp usually prescribes two month supplies. When I was living in London before moving down here my gp used to prescribe 3 months at a time. I've also had different brands of sulfasalazine and hydroxychloroquine given to me at times. I guess that's down to the pharmacies having to source it from different companies.

bpeal1 profile image
bpeal1 in reply to mjrminor

I live in Oxfordshire but as we're close to the boarder we come under the Swindon hospital. They have an interesting system in place where all DMARDs are prescribed by the hospital and they prescribe 3 months at a time but anti-inflammatories etc. are prescribed bu the GP and they only prescribe 1 month at a time.

Tiverland profile image
Tiverland

Hi. No problems in my area of Devon.

mjrminor profile image
mjrminor in reply to Tiverland

That's good to know - maybe it's a supplier problem or something with the pharmacies in my town.

mjrminor profile image
mjrminor

So I called the 3 pharmacies in town again today and my local Boots suddenly has found 100 tablets left of Sulfasalzine EN. They're holding on to them for me while my GP sends over an emergency prescription. That's a 2 week supply for me, so I guess I'll have to keep chasing up the pharmacies and hope they get more in soon.

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