There’s no point to this post

[Bramble2000]

Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering if I need loading doses again, like you do when you first start it. Trouble is, I asked the Pharmacist who told me to contact the Rheumatologist. That’s impossible and they cancelled my appointment with the nurse about six weeks ago and haven’t sent another. I’m so fed up with it. I’m still not taking the steroids for the PMR so I feel like I’m up sh*t creek without a paddle! 🤷‍♀️😆. Thanks for listening. X

[piglette]

Why aren’t you taking steroids for your PMR? Aren’t you in awful pain?

[Blearyeyed in reply to piglette]

If I remember rightly Bramble is one of our members whom can't take steroids because of extreme side effects.

[DorsetLady PMRGCAuk volunteer in reply to Blearyeyed]

Yes she is….

[Bramble2000 in reply to piglette]

I can’t take them and yes, I’m in awful pain

[Joann63 in reply to Bramble2000]

I feel your pain. I can't take stetoids either and due to other conditions I can't take Ibuprofen so I'm on pain relief only hahaha that's a joke. It does get you down after a while. I look forward to a good day or half a good day. Its hard to come to terms with this is your lot for a while until something helpful comes along. Try and stay strong

[Bramble2000 in reply to Joann63]

I can’t take anti inflammatory medicine either. I take Oramorph for the AS but of course it doesn’t touch the PMR.

[BLUEPMR in reply to Bramble2000]

I can't take them either or anti inflammatory like yourself have to rely on anti inflammatory diet, supplements and paracetamol. Life is very restricted and yes it gets you down because its so easy to become isolated. It takes a lot of effort to keep some sort of social life going but it's important to do that. To have something to look forward too makes life worth living.

[PMRpro Ambassador]

Don't know if this helps

ncbi.nlm.nih.gov/pmc/articl...

It is relative to IBD but includes Humira and restarting a drug will have similar features whatever the underlying disease.

[Bramble2000 in reply to PMRpro]

Thanks

[DorsetLady PMRGCAuk volunteer]

Why is it impossible to contact Rheumy? even though you don't have a current appointment with Nurse, you must still be in the system... I'd be ringing them...and leaving a message if nothing else.

[SheffieldJane]

My delivery company for Actemra/ Tocilizumab were really 5 star and they had a pharmacist who would advise on questions like yours. Like everyone else, I am wondering how you are coping with the pain etc

Are you sure your drug is safe to take after languishing in a domestic fridge. I was told that I couldn’t donate my sealed, left over Tocilizumab because it had not been kept in an Industrial fridge. Do check if this applies to your drug.

[Bramble2000 in reply to SheffieldJane]

It’s fine in a domestic fridge

[Blearyeyed in reply to SheffieldJane]

They're fine to keep in a fridge when they've been dispatched to you but they couldn't take back items and give them to someone else in case there was a problem with it for the patient whom got it after you , they couldn't state they guaranteed how it had been stored.They aren't meant to distribute oral medications to someone else that were prescribed to you either for the same reason , which is why they don't like to discover you need to bring back their mistakes. If you take them back , even if they are sealed, they are meant to dispose of them safely , not put them back on the shelf for use by another patient.

It's the required health and safety standard because they can't guarantee that something hasn't happened to the medication out of their possession that might have corrupted it. Bit like the chain of evidence in a Murder!😆😆😆

[Bramble2000 in reply to SheffieldJane]

I’m unsure what you mean. I’m not going to pass it on to anyone else. I’m a pharmacy tech. Obviously, once it’s left the pharmacy, it can’t be taken back.

[PMRpro Ambassador in reply to Bramble2000]

Bee was replying to SheffieldJane - it always says who the reply is to if it isn't the author of the pred.

[SheffieldJane in reply to Bramble2000]

Sorry, I was responding to your saying you hadn’t taken Humira for ages. I was concerned about how safely it keeps for ages in an ordinary fridge ( for you). A personal worry. The first thing my visitors do is open the fridge.

I am aware of Bee’s valid points. It just seemed an awful waste.

[Blearyeyed]

You are right what a nightmare.Are you actually getting through to the Rheumys Secretary but not getting a call back?

Often this can happen.

Have you got the direct number to his Secretary?

It's probably worth trying to get through to the Rheumys Secretary by the direct number or asking for her at the switchboard.

When you speak to her ask if she can take down your question and that you realise that the Rheumy may not be able to call themselves but could she ask them , get the answer and either call back to you that day with it or email it to you.

You can also ask for the Secretary s email and say you will send through the question for her to pass on in an email for her to reply to ( this also gives you an extra easy route of communication for general questions).

Also , ask her if there is a time that day that you should call back by if you don't hear anything.

This is a good strategy because they know they have a deadline, but if they are very busy they get spurred into action by the call and you usually get your answer.

Last , if that doesn't work ring and ask to speak to your GP because you have an urgent question about a treatment you are restarting. Tell the GP you aren't getting through to the Rheumy and ask them if you should do loading doses again like before , they may just look back at your record and be happy to answer. If they aren't sure tell them about the problem you have contacting the Rheumy and ask if they will email or phone them to get a more prompt response.

Your GP should also be able to put in a phone or email complaint to your Humira supplier about the delay in delivery to speed that up as well. Or , if you are being able to speak to the Humira company on the phone , politely but firmly remind them that if they don't arrange a day and date this week for your supply to arrive you are sorry but you will have no other choice but to put in a complaint to the NHS Trust about their service and request that they use a different service in future. This usually kicks them in to action.

The Pharmacist can only do so much , so although they could possibly kick the delivery company to provide your supply they shouldn't really advise patients on changes in doses and should only give patients recommendations to suggest and request from the GP or Specialist of alternatives of prescribed medications for you to try.

Try and get as much relaxation as you can for the weekend , nothing can be done until Monday. But , hopefully , after a few days of rest and getting your mind back in gear again you will get what you need with the new week.

I did say to Piglette that I thought you were one of the unfortunate people whom had tried steroids but had extreme side effects , was that right?

Have you been trying a NSAID in the meantime just to slightly ease the pain of your AS and general inflammation. Not the best result but it would help in the current situation.

Take care , Bee

[Bramble2000 in reply to Blearyeyed]

I take Oramorph for the AS pain. Thanks for your reply. X

[Pixix]

I think it’s a choice here, & you’ve made it. I remember you don’t want the side effects. I had every side effect in the book, but still took them. I really really wonder if you tried a low dose it may help a bit? PMR Pro will comment on if this would help. Obviously it wouldn’t be the dose your body craves, but could it helps a bit? In the lower doses, from 6mg downwards I found less side effects. On7mg my 42 year old marriage nearly split, my husband was going to leave, & I don’t blame him. Steroids had an appalling effect on me. So I do understand. I’m sad, as you won’t get these years back, & your life is awful. Tramadol & Morphine haven’t been working for my other diseases so I’m trialling Butec patches, building up the dosage gradually. But I guess, as you’re a Pharm Tech, you know all the options! I also had a steroid injection for Bursitis on Thursday (+ a 40 minutes appointment with my Doctor), & that’s working very well. I’ve been waiting a year to see a different rheumy now, & waited 2 and a hal years for 1st rheumy (Ehlers Danlos Syndrome). It will be 4 years since I was referred to Neurology, my date is May 2024. I think I’ve realised it’s good to focus on the diseases I can get help for, & accept the others instead of fighting them! When my GP thought I have zero negative rheumatoid arthritis (he still thinks so, but I can’t get the rheumy appt) he gave me a generalised depo methone injection into my rear, & it helped on many fronts. Perhaps go back to your GP again, & definitely keep ringing a rheumy! Or the dept, at least, & tell them you’re desperate! Good luck!

[BeachsideVia]

Stay strong! Look in to things you can do to really improve your health. You can do this right now! Cut out alcohol, smoking, and try eliminating gluten, nightshades and all dairy. Doctors are your safety net, and are there for you. Its just that rheumatic disorders are never seen as an emergency, even though we suffer. Here in the US, my Rheumy was worthless. My primary care doc is much more helpful. My problems are chronic and not severe, thank God. Those of us who have severe problems have these meds that save our life. If your problem is not severe, you fall into rheumatic purgatory. I chose to stop the meds and get healthy. I also have osteoporosis from cancer meds. I was on prolia and then reclast for over 7 years. I still have osteoporosis. I am not taking bone meds now. Diet rich in all nutrients, exercise at the gym (I literally have to DRAG myself there, I hate exercise so much). But I am mindful and grateful that modern medicine saved my life.

So, be healthy and happy!

[BLUEPMR]

Awe you do sound fed up Bramble2000 and with good reason by the sound of things. The point to your post is you need to let off steam to others who understand what it's like to live with chronic illness and pain. We can't take it away but just to be able to vent our feelings helps in a small way and we need to get any ammount of relief where we can. I'm thinking of you and feel for you. Hoping things improve in the near future. Meanwhile don't be hard on your self and get the rest you need enjoy the better days when they come.

[christi48]

I am so sorry you are having such a difficult time. When first dxd with PMR I resisted taking Pred because of what I read about the side effects and I am not a person who takes meds lightly, but the pain and stiffness were so bad, and my quality of life was waning after being healthy all my life, that I finally gave in and agreed to take 10mg but secretly just took 5 mg. I guess I was fortunate because that is all it took to relieve the pain. That was 18 months ago and now I am dealing with tapering . Now down to 4mg on the ds schedule but that has had its own set of problems. I liked what one person said about trying a small dose of Pred like I did (have not experienced any of the side-effects) and see if you can tolerate it and if it relieves some of the pain. My thoughts are with you and I hope you are able to find some relief. Best wishes.

[PMRpro Ambassador in reply to christi48]

The problem is that if taking a small dose of pred isn't enough to deal with the daily amount of inflammation it won't give even "some relief" - the left over inflammation will build up, like a dripping tap will eventually fill a bucket, albeit slowly, Then you are possibly back where you started.

[Bramble2000 in reply to PMRpro]

I’m fine where I am, it just gets me down sometimes.

[Pixix in reply to PMRpro]

Thanks, I just wondered if it might lighten some of Bramble’s suffering, but reli3ved to see she says she’s fine where she is. Thanks, S x