Any ideas?

[Gyspysmum]

Hey everyone, I love seeing your posts and reading them, but I don't often comment as I am always blown away by the experts on here who are so knowledgeable.

Short history of me. Diagnosed 5 years ago with PMR, turns out four doctors, five separate times, got this diagnosis wrong. I was placed on Pred at 40 mg 4 years ago for treatment of PMR( sgsin wrong dose for that illness, which I didn't have anyway). I didn't receive any feedback on what to do with the steroids, such as reducing the dose. In fact, I found that out from the PMR help page here.

Anyway, moved to a new health care location and within 6 months had been referred to a rheumatologist on an emergency referral.. After scans and blood tests, it was confirmed I had Seratin Positive Ra and placed on Meth. With a proper reduction of steroids in place.

Fast forward to now, I am finally off of steroids, which in itself has been awful as I have been on them for 3 years( and it also gave me steroid-induced diabetes)

I was started on the biological Benepali 10 weeks ago, and i was starting to see a liitle change, but 5 weeks ago my prescription didnt arrive, and after we called my Rhemy team x3 and eventually having to get Pals involve, turns out there is a shortage; haven't had the injection for 5 weeks now.

I am in agony, I dont say that lightly. I no longer have the steroids giving me that buffer, the Meth plateauded a long time ago and i cannot get help anywhere. I have called my GP and they won't prescribe me pain relief as it needs to be done via the rheumy team, and I cant get them to call me back

I have very little support outside of my husband and son, and I am literally running out of places to turn. I even emailed the UCLH asking if they could please help, but again, I have heard nothing back.

I am scared, I am so poorly right now, and I am trying to be patient, but I genuinely don't know what to do for the best.

I look forward to any advice you can give me, please.

Thank you so very much

Marie



[Madmusiclover]

of course they can prescribe you pain medication! Try 111.

[Gyspysmum in reply to Madmusiclover]

I just don't know what to say because I feel like I am waiting on the rheumy

[Madmusiclover in reply to Gyspysmum]

Well that’s not going to happen over the weekend my love. You can go to more than one place for help. Your GP is remiss.

[Deeb1764]

you need to call Pals , call the consultants Secretary and just keep Pushing. Maybe see your GP for a steroid shot to tide you over. Long term steroids, I too got diabetes 2 and still on them but needs must. If they can’t get Benapali surely they can agree on a new medication?

Sometimes it’s hard work battling but they would not cope with continuous pain so why expect you to be in pain and no solution.

Call NRAS if really stuck as well always have ideas.

[Gyspysmum in reply to Deeb1764]

I have called pals every day and left messages for the consultants secretary, still nothing, PALS called me today and said they had re enquired yesterday but they hadnt heard anything either, only that the depart managers were looking into multiple issues

[Runrig01]

My story is similar, although I did have polymyalgua and GCA. However after seeing a polymyalgia expert, hey suspected I had an overlap of symptoms, and found I also had ankylosing spondylitis, and had had it for approx 25yrs. Unfortunately I ended up with severe adrenal insufficiency, as the steroids shut my adrenals down, gave my osteoporosis as well as steroid induced diabetes. The adrenal insufficiency was diagnosed when I had a severe stroke due to an adrenal crisis. However I’m thankful to still be here, as without steroids it could be a different steroids.

There is no reason that your gp can’t provide pain relief, they may not want to give you a NSAID, as that could alter how you present to the rheumatologist. Were you not referred to a rheumatologist with your polymyalgia, I was diagnosed by rheumatology. You could try contacting the practice manager, to state you need some type of pain relief whilst you wait to see rheumatology. At this time of evening, you could try 111, and get meds from a late night chemist, to tide you over, till you resolve the issue with your gp.

[Gyspysmum in reply to Runrig01]

I was never sent to a rheumy until I moved to where I live now so everything is way more advanced. I also forgot to mention I have Fybro and am still waiting for any treatment for that, I am taking over the counter pain killers and they do nothing x

[Runrig01 in reply to Gyspysmum]

Why have they not prescribed treatment for the Fibro. Your gp can prescribe the likes of amitriptyline, gabapentin or pregabalin for that. As I said, contact the practice manager to resolve the pain medication issue. Unfortunately these days we have to advocate for ourselves 🤗

[Gyspysmum in reply to Runrig01]

I don't know why they havent, they have been hyperfocused on the Ra but everything else has fallen by the wayside.

[Madmusiclover in reply to Gyspysmum]

You have to rattle the cage bars I’m afraid. In your position I would call 111 for pain relief.

[Deeb1764 in reply to Gyspysmum]

Fibro vs RA make sure the RA is not pushed aside and vice versa. It’s so tough but my GP sorts the fibro for me. Definí all GP and say need emergency appointment as Pain off the scale and push push push. Feel for you as it’s so hard and tiring but only you can do this we can just will you on. You know your body and you know it needs help 🥰

[helixhelix]

would your GP at least prescribe an anti-inflammatory? Also there are some over the counter creams like voltarol that help, and perneton gel, as well as ice packs and hot wheat bags.

Hope you get some relief soon.

[Gyspysmum in reply to helixhelix]

I have been using Biofreeze/ volteral and also cool bags/ warm bags to alleviatee the pain, have been resting on cold pads, they do help but because there is so much heat they dont stay active very long

[ruth_p]

Ring 111 or go to an urgent treatment centre to get some pain relief, your GP should have prescribed you something for the pain. Even if it’s a short term solution, it won’t mask your symptoms that much to affect when you eventually get through to your rheumatologist. I’m so cross for you, if there’s a shortage of Benapali they should be giving you Enbrel which is the original version of it.

[Gyspysmum in reply to ruth_p]

I will call my doctors first thing Monday Morning and see what they can do. I have tried a few times this week, but I get the, no appointments nonsense. I will ask for a home visit to see if that helps them find one.

[pammi2]

that is disgusting how you rae treated. there ar plenty of pain meds, paracetamol, ibuprofen, stronger pain releif. see your gp as emergency appointment. Get on your rhuemy case, you ahve to chase them, they dont chase you or come to you, you hace to do the chasing. if not you know what i would do got to A & E and they have to look at you and tell them no one is calling you back, i think it is normal o have benapali for 5 times and not see results yet. i was on it and it lasted really well for 10 years and then boom, went down hill and have had 3 more changes and they are not working. DO NOT TAKE NO , KEEP CALLING , GO TO GP AND IF NOT GO TO A N E , i know what it is like for no support

[Gyspysmum in reply to pammi2]

Hey Pammi, I have left messages for the rheumy team constantly (there is ony a message service and they call you back) Hve spoken to PALS, my dr, I think everyone is right I need to caqll 111 or go to A and e because the pain is incredibly bad

[Leics]

All I can say is that’s a disgrace. As others have said ring 111 for short term pain relief or go to an urgent care centre. It sounds like you’ve explored all the avenues with PALS etc. I’ve been in your position where I was at the end of my tether so my last port of call as I had done everything else was to contact my MP who intervened on my behalf and a quick letter to the hospital trust chief executive and I didn’t have the problem again. In my case my appointments were cancelled continuously for two years and I was left with no other choice. Another avenue to explore maybe ?

[Gyspysmum in reply to Leics]

Thank you, have mentioned this to my husband who actually knows our local Mp and he is going send a email this afternoon after he finishes work.

[Leics in reply to Gyspysmum]

Well needs must at the end of the day that’s why we vote for them. It sorted my issue out sharpish. They need to be made aware that there are a lot of issues with biologics being in short supply and patients being without meds. It’s probably a brexit thing coz we don’t have the clout we used to but last year abatacept was in very short supply as well as Dmards and I’ve heard heart meds too. But 5 weeks without meds have left you in terrible pain so someone has to do something about it. Let us know how you get on.

[Sebastian247]

I'm so sorry to read what a terrible time your having. I can't add much to what others have already suggested. But in the past I've been prescribed pain relief by my GP for RA related pain. There's absolutely no reason they can't.

I wonder if a call to the NRAS helpline might be worth trying for ideas too? I really hope you get the help you need quickly. Best wishes. Sebastian.

[Gyspysmum in reply to Sebastian247]

Will find it and give them a call, thank you

[janmary]

I agree with those who have suggested calling 111 or a trip to A and E . Failing that contact your MP as suggested by Leics

Hope things are better soon

[Gyspysmum in reply to janmary]

Thankyou JanMary

[juliea793]

Is there a shortage of the drug ? I have looked it up online and says nothing apart from back in 2024. Has your supplier told you there is a shortage. Sometimes the problem can be your Rheumy team not updating the prescription. I cannot believe your GP can not prescribe some form of pain management. You can get Co-codamol over the counter if you tell the pharmacist your predicament . I wish you well.

[Gyspysmum in reply to juliea793]

The rheumy team said there was a shortage and that there were multiple people without the drug, they told my husband they closed the rheurmy dept down for three days to sort out the backlog of scripts and were issuing them that day, that was two weeks ago

[Leics in reply to Gyspysmum]

Sometimes unfortunately that’s the rheumy departments way of saying they have no staff or pharmacists. Look through your paperwork which you should have got from the hospital or biologics nurse and also see if you still have the delivery note as it will tell you the company that delivers them and give them an email or phone call. Unfortunately you may find the hospital blame them and they blame the hospital which isn’t helpful. Time to make a nuisance of yourself get those fighting shopping elbows out you deserve better care than you’re getting. Been there done that and have the t-shirt unfortunately.

[Otto11]

I’m sorry you’re having this struggle. I’m really surprised at your Rheumy team though. There was a shortage of my Biologic Abatacept last summer & I was given infusions at home instead. Surely they should be arranging something in its place. Have you called your delivery company to ask when it may be back in stock. I would call 111 if you are getting no help from other medics.

[Gyspysmum in reply to Otto11]

I dont have a number for the delivery company, well at least I dont think so,will have a look and see if I can find out from them, Thank you x

[Otto11 in reply to Gyspysmum]

You should have. How do you arrange your delivery? Which company are you with. when I was on original Humira it was Healthcare at home that delivered mine. It may have changed to Sciensus. x

[Gyspysmum in reply to Otto11]

I dont, the delivery comes out automatically, or should. i am with Healthnet and its a no reply email/ text as i have just checked.

[Otto11 in reply to Gyspysmum]

That’s not helpful is it. I’m with Lloyds now most of the time I need to call them to arrange my delivery. How frustrating for you. It’s awful having to constantly chase things. You hope you can get it sorted really soon x

[Otto11 in reply to Gyspysmum]

Just a thought. Are your blood tests up to date because if not the delivery company won’t get a prescription from the hospital. x

[Gyspysmum in reply to Otto11]

Yes, bloods are up to date, having them every month

[Otto11 in reply to Gyspysmum]

Oh bless you. I don't know. sorry x

[Jackie1947]

Is it a post code lottery? I live in the South West and have no trouble with my supplies of Beni. Hope you get sorted soon

[Gyspysmum in reply to Jackie1947]

I honestly dont know, had only been on it a short time so not sure if this is a normal think or not x

[medway-lady]

Why were you told short supply did they give you any other information? I have Etanercept and it used to be in short supply so was delivered monthly but it’s been back to normal three months at a time for past year. It’s due next week.

[Gyspysmum in reply to medway-lady]

Just that it was in short supply and they were in touch with the suppliers to get some, thats it.

[medway-lady in reply to Gyspysmum]

These things are so worrying. I’m expecting three months next week, but Sciensus haven’t said there is any issue. There is no shortage protocol online so have you been spun a lie? I’d email the chief Executive of your hospital and query the information you’ve been given and ask for them to contact your RA consultant and for that person to get back to you. It does say that Elerezi the bio similar to bio similar Benepali is in short supply so are you recorded with the right medication or should you be changed from Elerezi to Benepali. I’d definitely ask some questions and why take pain killers when you should be getting a therapeutic medication.

[Happy5]

Your GP can prescribe pain relief as others have said try 111 too.

Feel for you, RA pain is excruciating, agree with the others about getting hold of your RA team you should have an advice line number? The specialist nurse are invaluable at sorting support treatment wise for you. You have been let down with falling between 2 stools of RA team and GP you need to feed that back to the RA team. Regarding your GP once you're getting better contact the Practise Manager of the GP and explain lack of support.

On a different topic I have a home help even though I have family help, the expense is covered by attendance allowance. Hugh help with shopping picking up medications in fact cos she lives locally in an emergency she can assist.

All the best 🤗

[Beachwalk]

are you close enough to walk into the RA reception and say you will wait for a cancellation to see someone. I’m so sorry for you. I did walk in and waited a few months ago and it worked for me. They need to change you to a med that’s in stock. Good luck.

[Gyspysmum in reply to Beachwalk]

no, unfortunately its a hour and a half away by car

[Mozart150]

sorry to hear this. I’ve read some of the reply’s . I ended up having to call an ambulance (first time ever aged 55) because I was in so much pain in a flare I couldn’t get out of bed -they gave me gas & air and at hospital -intravenous steroids and Prednisolone to go home with & they changed my immunosuppressant. I had been waiting for the rheumy nurse to get back to me…… …. ! please don’t leave it -go to A& E if you must. That massive flare could have been avoided if I had been listened to. I’ve learnt a lot on this journey and now stand up for myself but I understand when you are in so much pain it is so hard to fight for yourself and you shouldn’t have to. Good luck. 😉 xxx