Change of medication : Hi everyone how are you all... - LUPUS UK

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Change of medication

Froggie70 profile image

Hi everyone how are you all? Hope you’re well. Apologies for not being on the site for a while, work has been super busy. Just wanted to ask a quick question please. Has anyone ever changed medication and if so how did you feel? I’ve been on 25mg of Methotrexate for years but sadly it’s no longer working. A couple of weeks back I had a massive swollen gland and was given antibiotics so had to come off Methotrexate. This coincided with my hospital visit where I’ve been taken off Methotrexate permanently and now I’m on Azathioprine. I understand it takes 6-12 weeks for Azathioprine to work and I’ve been off Methotrexate for 4 weeks now and I’m in agony. I feel like I’ve gone back years. My joints are so badly swollen especially in my hands and shoulders, the mornings are awful, I can hardly get dressed. I’m on 300/50 Cocodamol but tbh they are not even touching the pain. I’ve been offered no other pain relief although I have problems taking NSAIDs so that’s not an option but I can’t bear the thought of weeks of this, I was crying getting dressed this morning and that’s not me. Just wondered whether anyone had been through anything similar and how you coped. Best wishes.

24 Replies

Hi Froggie, what you're going through sounds awful, nsaids and Co codamol never worked for my pain, so I have a morphine patch and take tramadol tablets, it doesn't remove the pain but it does make it so that you can ignore it and carry on with life.

Froggie70 profile image
Froggie70 in reply to Lulamay7

Hello thanks so much for replying. Yeah definitely need something, even just to lessen the pain a bit as I can barely move today. I’m going to phone Rheumy Line on Monday. Take care. X

I am so sorry that you are suffering . I am on mst and Garbapentin at night, it does not take away the pain but helps me function. Contact your Consultant and insist on more efficient pain relief. Good luck xxx

Hello there thanks for coming back to me. Yeah as I replied to Lulamay I’m going to phone Rheumatology on Monday. Thinking about it now (and isn’t hindsight a wonderful thing) I’m surprised that the consultant didn’t foresee this happening and get pain relief organised from the start. Thanks again and hope you’re doing ok. X

Great please let us know how you get on. I am crossing my fingers and toes as I had my MRI after 15 months waiting while they argued who was responsible and yesterday my Urologist rang ( a new one) and said your Rheumatologist and Orthopaedic Surgeon are failing you, I will write to them and tell them they need to pull their fingers out 😳. I nearly cheered. Xxx

Yay cecily, so pleased to hear that. 🤞you get better help soon . Bet you couldnt quite believe it either. Xx❤👍❤

No I was lost for words really. Honesty is rare these days xxx

Hi there, what a difference it makes to have someone on the ball and fighting your corner. So sorry to hear you’ve had to wait all that time, fingers crossed things will start to move really soon. X

Thank you so much. Honestly I am not holding my breath but my Rheumatologist did respond within days when my Respiratory Consultant contacted him 🤞🏻 Xxx

I’m so sorry Froggy. Crying pain is so awful there are no appropriate words. I agree with Cecily. I have lupus and a serious spine issue. I take large doses of gabapentin and hydroxy and 4 mg prednisone. Love to take more pred. But we all know how that goes. I hope your team of doctors help you transition with some pain relief 🌈🙏🏻Titters

Froggie70 profile image
Froggie70 in reply to Titters

Hello Titters thanks for your reply. Definite call on Monday as I can’t go on like this, it’s a sad state of affairs when you can’t put on your own undies😦. I hope you’re doing ok. Take care.

Im so sorry to read of your suffering froggie. Glad your phoning the rheumy helpline. They can give steroid injections to act as a quicker reliever before the DMARDs kick in. Definitely a big oversight by your rheumy. Not thinking of this. Do keep us posted how monday goes and i hope your better soon. Xx❤🤞❤🤞❤🤞❤🤞❤

Froggie70 profile image
Froggie70 in reply to misty14

Hi Misty, thanks for your kind words, I’ll post on here to let you know. X

Froggie70 profile image
Froggie70 in reply to misty14

Hi there nothing much to report I’m afraid. Called Rheumy Line and got an answer machine with a message saying leave a message and they’ll get back in 72 hours but might be longer as they are under pressure. Pain has now spread to my jaw and I’m in agony so I’m just going to have to take CoCodamol every 4 hours and if I go over the 8 a day max then so be it. If I get a call back I’ll let you know. X

misty14 profile image
misty14 in reply to Froggie70

Keeping 👌🏻 frog goes, it's not too long until you get a call but I know staffing levels will be less now it's school hols. Our Rheumy line has been temporarily suspended due to no staff. It's just awful now.

Is it the TMJ joint in your jaw that's bad or are you getting chest pain too. Do hope not as that's an A&E job!.

I was due to have my Endo appt this aft but it's been changed to mid Aug as the dr was needed in our hospital!. It's horrible needing help but knowing their under pressure.

Anyway, hope you hear soon. Xx👌🏻❤️👌🏻

Froggie70 profile image
Froggie70 in reply to misty14

Hi there got a call back but they said they can do nothing. No appointments. I have a follow up with consultant on 5th August so I need to wait until then. I could cry. The nurse said I could call my GP and see if I can get codeine on its own for breakthrough pain but they only take calls in the morning. It’s TMJ pain I’ve got.

I’m so sorry that your appointment has been postponed, you just wonder where all this is going to end. Take care. X

misty14 profile image
misty14 in reply to Froggie70

I'm so sorry froggie that you've got to get thru till your appt on the 5th. I do hope you can ring your gp and get those different painkillers. Keeping 🤞for you.

I do know what its like to have to cope with severe pain until an appt. The 5th is quite soon really but not when we're battling this pain everyday.

Ive also been trying to get a gastro appt for 4 weeks now to learn about test results and im in agony after each meal. I got so unlucky as my consultant has combined covid recovery with his annual leave and i i just don't know when i can see him now. Its good you have a date to hold onto.

Its scary being in need but not being able to access the care because of staff shortages. Im going to ring my gp surgery tomorrow too. 🤞for us both. Take care. Xx💐❤💐🤞🦋🙏

Froggie70 profile image
Froggie70 in reply to misty14

Misty I’m thinking of you and keeping everything crossed (that doesn’t hurt😉) for us both. Take care and let me know how you get on. Sending 🤗🤗🤗

misty14 profile image
misty14 in reply to Froggie70

Thank you froggie for your lovely mesdage. I do hope you've been as successful as me today in getting a codiene prescription for your pain. I spoke to a duty doctor at my gp surgery and she was very thorough and prescribed it. Its helping my pain already. She wants me todo another test as well.

Ive also learn't my gadtro consultant is back on the 8th so ive got a date to hang onto now like you.

I do hope the 5th goes well for you and you get the help you need. Pain is just so exhausting!. Let me know how you get on. Keeping 🤞. Xx🤞❤🤞❤

Froggie70 profile image
Froggie70 in reply to misty14

Hi Misty. I’m so glad to hear how things worked out and that pain relief is doing it’s job for you already. It’s been a blooming carry on my end (that’s the clean version) and I’ve only just got my prescription today. I’m not sure where in the saga I left off last time but long story short phoned the surgery back on Wednesday and receptionist said I was getting a beta blocker. What????? Said I didn’t think that was right and she said to phone back next day. Very politely but firmly I told her it wasn’t on and I needed to speak to a doctor same day. Did get a call back and got a prescription for Dihydrocodeine, it’s not what the hospital suggested, they said Codeine Phosphate but I phoned my pharmacy and they said it was much the same. Tbh I’ll take anything at this point. Had to get bloods done this morning and the nurse was shocked at the sight of me, although I don’t think being able to get a brush through my hair helped. I’m channelling Tina Turner at the moment🥴. Roll on the 5th and the 8th for both of us. You take care of yourself and sending 🤗🤗🤗

misty14 profile image
misty14 in reply to Froggie70

Im very sorry froggie that you've had such a battle to get the help you need. I do hope they help you thru. It shouldnt have to be like this though. Its frightening as gp surgeries in my area Devon are on Red Alert as they can't cope with demand and need more funding. I was lucky to get mine without a hitch!. It makes us feel very vulnerable. Roll on Sept when holiday season is over. Good luck with the 5th, i so hope you won't need to channel your inner Tina Turner then too!. Xx🤞❤🤞👋❤🤞❤👋

misty14 profile image
misty14 in reply to Froggie70

P. S Don't go over the 8 a day Cocodamol limit. They're strong painkillers and you'd be overdosing. Take care. Xx

Hi Froggie, So sorry to hear your problems. I’m in the process of doing the same after two stays in hospital earlier this year. Kidney function plummeted in jan/feb and also had pancytopenia which Rh thought was due to methotrexate. (They didn’t really know what was happening!) Had large infusions of steroid and then high dose for a couple of months. Then upper GI bleed in March due to taking Alendronic acid for bones. Now reducing steroids and on Azathioprine for 2 months. I’m finding it hard to get over these things because, I think, of the changeover. Lots of aches and pains, fevers and chills, sinus and ear infection etc etc! I’m waiting for Aza to kick in and rejuvenate me 😂. I’ll give it a few more weeks and continue reducing steroids and hope things get better. Here’s hoping it works out better for both of us very soon.

Froggie70 profile image
Froggie70 in reply to Adnil2591

Hello there. You’ve had a terrible time of it, I hope you’re on the mend now. You sometimes wonder if the ‘treatments’ aren’t more of a problem than a cure but what can you do? You take care of yourself and here’s hoping the Aza kicks in very soon for both of us. X

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