Junior doctors strike scuppers consultant telephone appointment

[dmags]

I have been having possible side effects from biological (on my 6th and had different side effects on all of them)blurred vision and extreme fatigue on this one, gp thinks its related , nurse practitioner not sure but stopped treatment and given telephone consultation appointment just been told consultant now has to cover ward due to strike and will be mid April before it can be rearranged , very frustrating as flaring up , support has recently been poor was better through covid. Has others had similar experience

[Neonkittie17]

I had my rheumy appointment 3 weeks ago, so that was avoiding the nurse/doctor strikes, but think I’ll be postponed due to another area of consultation due later this month. I hope you can last out till mid April. I didn’t see a consultant from January 2020 till February 2023. So better now for me.

[dmags in reply to Neonkittie17]

Hi think i will go to gp and push for steroid jab to cover me , and yes in comparison I did very well with consultations over covid just seems to have gone downhill since nice to hear yours has got better.

[Neonkittie17 in reply to dmags]

Thank you. I do hope you can get a steroid shot to tide you over.

[Blackberrywine in reply to dmags]

It might be worth emailing rheumatology nurses to ask them to get GP to give you a steroid shot. That worked for me.

[Caza in reply to dmags]

I was desperate before Christmas. Had a flare that lasted for a few weeks. My GP wouldn’t give me a steroid injection, it’s not something that we do here, I was told. I waited three weeks to be told that 😡. I’ve got appointment to see my consultant on Monday 🤞

[dmags in reply to Caza]

Good luck for Monday Over the years I have found out which doctors at our practice are willing to do the steroid jab I am not overly keen on steroids so use them as last resort but they do work 😀

[Caza in reply to dmags]

I’ve only ever had two but they were fantastic. I’m off meds now. My consultants choice not mine. So haven’t taken anything at all now for a year. I’m not great with strong painkillers so a steroid jab before Christmas would’ve been the best present ever.

A bit of a long story but had a flare beg dec, phoned my GP, receptionist was lovely, a doc would phone me back. Nope was given an appointment with a young woman who was on work experience I was told via the phone for two weeks time 😱. She went off sick so waited another week & got a call from a call centre. He couldn’t hear me I couldn’t hear him. Nope he couldn’t give me a steroid jab or anything for my sinus infection. Got a prescription for painkillers that I can’t take & laxatives I don’t need. Suffered all over Christmas not being able to walk or breathe properly. Eventually spoke to a doctor got antibiotics all better in just a few days. Took me 5 weeks for that outcome 😡

[RAGuy]

This is good advice you have here. A steroid to help you out now, no need to suffer unduly, and push for a decision on your treatment.

Some people are more sensitive to side effect and I am one of them, It can come down to those you can manage and those you can't. Extreme fatigue is unacceptable as is dramatically affects your quality of life. I had to change from one biologic as I lost half a week every week with the fatigue.

Be assertive about another appointment, they are probably doing the best they can but you need action.

Good luck and better health

[Leics]

I’m finding things very difficult. It’s taken me 3 weeks to speak to rheumy nurse. When I finally got through she did arrange my next prescription to be done because I’ve had to come off meds for one thing and another and not had any since January. I’m flaring so badly atm. Nurse said she would get back to me and she hasn’t so don’t know if she managed to get me an appointment or not. GP won’t give advice or steroids or injection so they won’t help. My prescription wasn’t actioned but with a wing and a prayer I should have a delivery on Friday this week. I’ve just about given up and no doubt an appointment has/was made but they didn’t bother to tell me about it so I will have to try and speak to them again. No luck so far this week and I’ve tried 100 times a day.

[Luludean in reply to Leics]

Leics, good morning . My gp of many years simply would not discuss biologics at all. I wrote to the practice manager for advice , she wrote back saying the surgery eould not comment on biologics!

It is a big surgery!! I have heart issues and persistent AF so s bit needy. I started the Adilamabub injections but could get no support or advice from my gp. When I got side effects ( uti s after each two weekly injection ) I had to have anti biotics . The drugs wipe out the immune system so, if you have a weakness the bugs kick in . I was left with no support or structure from a surgery I depended on .

The rheumatology consultant ( only seen twice ) was cold and evasive , not wanting to link uti s with the biologics. I was left with no support from the two places I had relied on . I have lost all confidence and now trust no one . I know that biologics work for many.

[Leics in reply to Luludean]

I’ve since had an appointment with rheumy through the post for June 12th. That’s not going to help with my flare but at least I should get to see consultant. I only asked GP if I could restart mtx as I had to come off it with raised liver function he wouldn’t say which isn’t helpful but now I’ve run out of mtx injections so no meds again. Due to arrive today but with the snow not holding my breath. It’s very difficult when you have lost faith with docs the only advice I can give is keep pushing keep trying and keep your fingers crossed things will improve.

[Summerrain14]

I am so sorry to hear about the side effects you are experiencing bless you. Daft question from me but does your rheumatology team have an advice line? So sorry if you have already contacting them, I was just not sure from your message. It is so hard that you have been left with no advice or help with these side effects. Some rheumatology teams also have specialist biologic nurses too but appreciate all the teams work so differently. The impact of covid is still very much being felt by many people with delays to appointments and now the strikes really impacting too. I do hope you can get some support/relieve very soon.

I have been very fortunate with my rheumatology team in fairness. Our rheumatology nurse is so lovely and supportive. I had to contact them recently as had a huge flare up and the nurse rang me back the same day from my rheumatology team. I am on steroids permanently now, thankfully a very low dose so my steroids were increased to settle down my flare up.

With other consultants in the hospital my GP surgery has also been very proactive at writing an urgent letter to them asking for advice on how to manage things and get me an appointment quicker. I do realise just how lucky I am.

Thinking of you and hope that you do get some much needed support and relief soon. A steroid injection seems a good way forward to help whilst you wait for an appointment with your rheumatologist to review your current meds.

Gentle hugs x

[dmags in reply to Summerrain14]

Hi we do have an advice line sometimes good this time the suggestion was a bag frozen peas on affected joints not really practical on so many joints !! but the good news is I have got an appointment beginning of April and a low dose jab on Monday so should be ok for a little while take care

[tyncwmmarchhywel]

Hi, may I ask how low is low on steroid. I am on 5mg, but struggle.

[Oshgosh]

I’ve given up on rheumatology.

I haven’t spoke to them since last January. If I leave a message no one gets back to me.

I had an appointment .in September,but it was cancelled,due to being on the same day as the Queens funeral.

Some one rang me to check I knew it was cancelled,she said it would be rescheduled.9th March and never been contacted.

[Lolabridge in reply to Oshgosh]

Don't give up! Contact them to ask why they have n't contacted you offering a new appointment date. Rheumatology departments are overwhelmed now so you will have to let them know you need help. We're into the realms of PIFU now: Patient Initiated Follow Up. I recommend you send an email rather than phone - I find that far more effective these days.