Have I made the right decision?

[marigolds]

Hi guys. After giving in to doctor and Rheumatologist I came off pred in February 1918. Have been through the mill with cataract removal and still am suffering. Have aged a lot with muscle weakness hip pain, can't walk far. I am now taking your advice and taking 5mg (out of date) pred. I know the doctor and Rheumatologist wouldn't give me any. Hoping it will improve my wellbeing. Thought It might help.

[PMRpro Ambassador]

You really shouldn't be taking out of date tablets. Do try to see a different GP and discuss it all properly. There is no point taking pred unless it is high enough a dose to make a difference - and that means getting a doctor to treat the patient in front of them and their problems.

[marigolds in reply to PMRpro]

No chance, thanks for reply

[Kendrew]

Hi marigolds,Would definitely reiterate what Pro has advised....... really not advisable to take any medication that's out of date. You said you'd come off it in 1918 which is obviously a mistake...but did you mean 2018? If so, then that's 3yrs ago....quite a long time so probably not advisable to put yourself back on it without a proper consultation with an appropriate medical professional first...just to eliminate anything else that might be the cause of your symptoms.

[ChrisinNam in reply to Kendrew]

In general, out of date medications are probably less effective than they should be, not dangerous. I'm not a pharmacist, but that's my rule of thumb! Good idea to check with a pharmacist, but of course they would always say don't take them. They need to sell their meds.

[marigolds in reply to ChrisinNam]

Yes thanks I am on the 3rd and only intend to take for a week to see if any improvement.

[marigolds in reply to Kendrew]

Yes it was 2018 but as I am NHS patient it is easier said than done. Everything I suggest is vetoed. All Rheumatologist wants me to do is take osteoporosis drugs. The pred is 5mg an if no improvement within a week I shall stop. Thanks

[marigolds in reply to Kendrew]

Sorry about the glitch yes 2018 the surgery will give me anything for depression which doesn't make sense.

[MrsNails]

As Kendrick asks was it 2018 you came off Pred? You really should Consult your Doctor & taking Out of Date Tablets is not a good idea in any circumstances.....Kind Regards

MrsN

[SheffieldJane]

I am really sorry that you are still suffering and appear to be unsupported by your current doctors. Please seek a more empathic doctor and don’t self medicate with old drugs. I hope that your eyes have finally settled. What are the current symptoms that you are trying to alleviate? Is seeing a private Rheumatologist a feasible alternative right now. You need better help.

[marigolds in reply to SheffieldJane]

Thank you Jane I had both eyes done.The right one I had to have antibiotics for conjunctivitis the left one got completely covered in scar tissue and I needed to be like that for 5 months then have an anterior capsulotomy op. Haven't had a lot of luck. It keeps getting Blepharitis. Dr is treating me but she will never let me have steroids. As I am 87 I stay with her as she knows all my problem's. Walking is no good and I get fatigue so I thought I would experiment.

[SheffieldJane in reply to marigolds]

You certainly have been through a great deal. This is the first negative story I have heard about the cataract operation. It sounds like a nightmare. I have had an eyelid infection for months, nothing really helps. I just keep on top of it with Blepharitis wipes and golden eye ointment if it gets bad. They constantly prickle. A doctor you trust is a great gift. Get her to properly explain why she won’t prescribe steroids. You need to work together so that you can feel the best you can. I wonder if a physio could help? I have got a little star who has got me moving, just the right sort of personality for me. I am on 10 mgs of Prednisalone and currently taking a break from Tocilizumab. My fatigue is off the scale bad and nobody seems to have a solution. I manage it with regular naps. Best wishes Jane 🌼

[marigolds in reply to SheffieldJane]

I think she just doesn't like steroids and didn't want me to have them in the first place. I had to beg for them as my biceps and neck were killing me, stiffness on waking couldn't move had to have help gettingout of bed. .She has given me 2 prescriptions for the prickly eyes. I also use salt water very carefully. Read it on youtube, in eyebath.

[PMRpro Ambassador in reply to marigolds]

She may not like steroids - but they are the first line treatment for PMR. I do not approve of doctors who inflict their predilections on their patients.

[marigolds in reply to PMRpro]

Just to update I felt some improvement in my groin hips so am now discontinuing as I had a nasty dream last night.

[SheffieldJane in reply to marigolds]

Thank you I will. I have a nasal infection too and that needs salt water solution too. It feels like I am falling apart.Your pains sound so PMR-like. I can see why you want Prednisalone. Another doctor seems to be your only option. Let us know how you go Marigolds. X

[marigolds in reply to SheffieldJane]

Hello Jane I definitely felt better but had a bad dream so have decided to stop taking the pred in case it was that. My autoimmunity also causes inflamed sinuses and Sjogren's symptoms.

[marigolds in reply to SheffieldJane]

Feeling a lot better now woke up once in the night sweating and dry mouth and tongue but hips are much better so it might have done some good hope you are alright Xx

[SheffieldJane in reply to marigolds]

I have the dry mouth symptom. PMRPro recommended Xylimelts. I get them from Amazon and they are the best thing I’ve tried. You stick them to the gum under your upper lip and they dissolve slowly through the night. I was worried that they would come loose and choke me, but they don’t. They relieve it completely. Xx

[marigolds in reply to SheffieldJane]

Sorry I didn't reply yesterday but my eyes were playing up and I needed to rest them. My dentist prescribes me with Salivix Dry mouth pastilles which I find very good in a crisis. Can you tell me anything for my dry sinuses just dry up and irritate me all the while. My Doctor doesn't understand.

[SheffieldJane in reply to marigolds]

I bought something called a Netipot with sachets of a salt solution to wash out my nasal passages. I don’t do it very often but I suspect it is quite helpful.Don’t worry about replying. Our GP’s don’t seem to have time for what they regard as routine stuff. These things do get us down though. X

[Highlandtiger in reply to marigolds]

There’s a product called Stérimar which you might find helpful. You can get it in chemists and supermarkets. I suspect it does something similar to SheffieldJane 's Netipot but may be less faff.

[Hidden]

Whether or not your drugs are out of date ... what are you going to do when your stash runs out?

[Bcol]

Hi Marigolds I'm a bit confused as your profile says you were diagnosed with GCA in May 2018, so when/why did you come off the Pred? As everyone else has said, it's time to bin the out of date medication and to visit a doctor and get some professional advice.

[marigolds in reply to Bcol]

Have already done that have you tried getting help at the moment. Came off pred February 2018. I only have telephone consultations with doctor ten minutes and she finishes. Fed up with it.

[Whippetygirl in reply to marigolds]

Have you got any family that can help you sort this out with your GP , you should not have to cope with this alone.

[DogAgilityObsessed]

I endorse previous comments and would add pred is not something to start taking (even if still within date) without the ability to get more. After two weeks (I think) you will become dependent and should not stop suddenly.

[marigolds in reply to DogAgilityObsessed]

Please see reply to Bcol above

[Grannyasbo]

Hi marigolds. So sorry to hear the challenges you are dealing with and wish you well with your cataract op recovery. Btw my partner just had it done and the optician was really good advising on cheap off the peg glasses while it all settled, when accessing the hospital team was difficult due to COVID. And saying don’t waste your money on more expensive options till it’s all settled down. I’m pretty new to PMR but I do know that taking out of date meds is not a good idea. I agree with other posts about talking to another dr or taking a different approach with yours. Some GPs will look things up so some info from PMRGCAUK may help? Ask for a longer consult and to make a decision together about way forward. The language that might land with a medic is now “shared decision making” with patients. Which means looking at all the available options, going through pros and cons of each together and deciding together which to try.

I often write things down before I have a consult with a dr. What I want to tell them, questions I have, what I think is the way forward. I also find it works if I flannel them a bit and say things like “ I read about blah on the PMRGCAUK web site/ in the NICE guidelines (see link below if you’re not familiar) what do you think, does it apply to me?” Good luck. Hope you get a good result.

nice.org.uk/about/what-we-d...

[nuigini]

Agree that you need to find a new GP to obtain the support you need.

However, on the subject of expired medication. I recently returned to Canada after being stuck in Panama for 18 months. I was unable to get any prednisone below 10 mg. I had a limited supply of 5 mg and 1 mg tablets!

During most of those months I was on 14 mg. After doing a lot of research on expiry dates I learned that many medications were effective years after the expiry date. I began taking 1 mg tablets which 'expired' January 2018 and took them for 6 months. About a month ago I switched back to my limited supply of the more current date tablets. There were no hiccups.

[marigolds in reply to nuigini]

That's what I was hoping to hear thank you

[Whippetygirl]

My heart goes out to you, I would approach your GP again, this is totally unacceptable you can’t exist like this.