Sodium cromoglicate - GP won't supply any more

[PurpleNel]

Good afternoon everyone and thank you in advance for any help anyone might be able to offer.

I have MCAS and POTS (as well as autoimmune, ME/CFS, histamine intolerance and a raft of other conditions) and recently started on sodium cromoglicate. The outcome has been almost miraculous - the first medication of my many that seems to have had any real effect. Even my standing heart rate with POTS has seen a significant improvement.

Now, my GP surgery tell me the locum who originally prescribed it should never have done so because it is too expensive and they are withdrawing my prescription. I could scream.

I can't afford to go back to a private consultant to get a private prescription. Has anyone got any suggestions?

If anyone knows of anywhere I can source it myself without a prescription please private message me. I know this is a dodgy route to go down but I am faced with an impossible choice.

Thank again in advance.

[Marcilhac]

I have been diagnosed by Guys and st Thomas’s immunology / haematology. They have that medication on their recommendation list for Mastocytosis which they sent to my GP. . You can ask for a second opinion including from a specialist. If you are in London ask to see Dr Grattan. Make a complaint about your GP if they won’t give you a referral. GPs are ignorant often about these conditions.

[PurpleNel in reply to Marcilhac]

Thank you for your reply. I think things get complicated for me because I am with a private specialist. He makes lots of recommendations but the GP can choose to ignore them.

Total ignorance of MCAS within the NHS really doesn't help. Who would the GP refer me to? I have already asked and have been told there are no specialists dealing with MCAS and they will just leave me in the hands of the private consultant.

It is all a bit of a frustrating mess.

[Marcilhac in reply to PurpleNel]

The level of ignorance among GPs does make things difficult but the idea that the NHS is totally ignorant is not the case. Dr Grattan Consultant at Guys and St Thomas's Immunology Department has a MAST Cell/ Mastocytosis Clinic on Fridays (at St Thomas's ). Patients who show signs of MCAS/ Mastocytosis are then referred to the Haematology Consultant (in Guys) for a genetic scan . Mine showed the C-kit mutation which is the mutation behind the problem and I have now had a Bone Marrow biopsy to confirm degree of mutation in my MAST cells (awaiting result) . So the NHS is very capable of diagnosing and treating this condition. I usggest that you challenge your GP and demand a referral to Dr Grattan.

[Marcilhac in reply to PurpleNel]

I should have mentioned that the doctor who first identified the Mast Cell issue was actually Dr Boon Lim Cardiologist at Hammersmith Hospital Syncope clinic. He is well aware of the impact of MCAS. He worked out that it was causing my night-time sweating and palpitations and that led me to ask to see the Guys and St Thomas's immunology Department who proved him correct.

[PurpleNel in reply to Marcilhac]

Thank you so much for the time you have taken to give me this very valuable info.It gives me something to approach the GP with. I had NO idea that there was anyone within the NHS dealing with this. Great

And thanks again very much.

[Marcilhac in reply to PurpleNel]

Let me know if you get a referral. I’d start with Dr Grattan (immunologist) He can check your symptoms etc and can then refer you on to dr Priya Sriskandarajah and / or dr DH Radia who are the haematologists researching Mastocytosis - also in Guys and St Thomas’s . Good luck. Don’t let them get you down!

[PurpleNel in reply to Marcilhac]

Thanks for your encouragement and knowledge - truly appreciated

[Billyash]

Hi Sorry to hear that your GP is being being like this. Can I ask what the locum was prescribing? Was it tablet form ? And what dose.

I have similar issues to you and have not had any look with Antihistamines or Mast cell drugs such as Famatodine.

It may be worth saving up if you can to get a private prescription.

Or try another surgery locally.

Hope you get sorted.

[PurpleNel in reply to Billyash]

Thanks for replying.Yes, it's the tablet form. I was taking 4 a day, each tab 100mg.

I take lots of antihistamines - famotidine, ketotifen and fexofenadine but none have had the miraculous effect that sodium cromoglicate had.

I have just paid for a private prescription - £180 for 25 days. Can do that as a one-off but not every month.

I wish you luck too but sadly I think we are fighting a losing battle.

[CandiR]

Hi Purple Nel,

I was researching Sodium Cromoglicate when I discovered your post. My son is going through hell with (what I’m convinced) is POTs and mast cell activation syndrome.

I then realised that sadly, Sodium Crom is no longer available in the UK (typical!)

But the reason I’m contacting you is just to say that I’ve discovered a product called ‘PENTATOP’ (sodium cromoglicate) in Germany, that doesn’t require a prescription.

I’m going to give it a try (paid £33 for 50 capsules) but I’m desperate!

Just thought I ought to mention it incase you didn’t already know about it! 😊

[PurpleNel in reply to CandiR]

I am so sorry to hear about your son. It breaks my heart when I hear about youngsters suffering. I am in my 50s and at least I had a chance at life before this devastation hit.My battle with GP continues for the sodium cromoglicate but the problem appears to be because it is 'off label's which leaves MCAS and POTS patients totally uncared for because there are no licensed medications for either.

I paid for 1 private prescription but it was £180 for 25 days and I just don't have the money for that.

Hadn't come across the PENTATOP so thank you soooo much for taking the time to let me know. Will try it. Anything is worth it when you are desperate isn't it.

Thanks so much again for taking the time to reply with this information - it is so kind of you.

[CandiR in reply to PurpleNel]

I’m so glad my information may be of some use!

It’s available from German pharmacies online without a prescription BUT it’s also sold on Amazon on behalf of said pharmacies.

So I used my UK Amazon account, it switches payment from euros to GBP for you.

Top tip when searching google for it, type ‘PENTATOP Sodium Cromoglicate’ but search ‘images’ instead, it ought to bring up the ones sold on Amazon too (that’s the only way I could find it)

I really hope this is light at the end of the tunnel! 🤞🙏🏼😊

Sodium Cromoglicate capsules

[PurpleNel in reply to CandiR]

Bless you for taking the time to tell me this - that is so kind and SUPER helpful. What a huge blessing this community is.

[Histamineuk]

That seems a bit unfair for the GP to not continue it, if it gives you relief. I did not think this was an expensive medicine, as the active ingredient is used in low cost eye drops / nasal sprays.

I myself have an unusual digestive issue, where after I eat certain foods, my stomach goes crazy and triggers rhinitis and tachycardia and a list of odd allergic type reactions. I asked my NHS doctor could I try Sodium Cromoglicate and he said sure, so it's very dependent on the doctor you get at the NHS. Although I am still waiting for my local pharmacy to supply it!

[PurpleNel in reply to Histamineuk]

How interesting - it really is just hit and miss with the GP isn't it. Where are you located out of interest.Not sure why the sodium cromoglicate tablets are so expensive (£120 for month supply cost to NHS) when the drops for eyes, as you say, are not just cheap but non-prescription.

Am at peace with it now although at the beginning I was devastated. It felt so cruel to give me a glimpse of what I could be like and then take it away. But i am not going to waste the tiny amount of energy I have every day fighting it. The universe obviously has something else planned for me.

[Histamineuk in reply to PurpleNel]

I'm in West Yorkshire 😁

It's completely hit and miss with the GPs, it's also almost impossible to have continuity with one which is a good fit, which makes it more frustrating. When someone is dealing with something chronic, which inevitably involves a little bit of experimentation with different types of medication, until you arrive at one which helps your symptoms. At least you have tried this and you know it helps, that is half the battle 😊