How much should I pester?

[Bowtruckle]

Currently on Hydroxychloroquine, and have been for 7 months. I don't have a definite diagnosis, just that there is signs of mild synovitis in my hands and wrists (but these were the only joints scanned as they were the worst at the time of tests. I also have hypermobility, and B12 deficiency (which I have had injections for for the past 6 years).

When I was told of the synovitis, I was given the option of which DMARD to go for, the way it was explained (I think I wrote about this before) I chose Hydroxy because it was the mildest, and my synovitis appears to be mild.

I had a nurse appointment after 3 months on it, and told them I don't feel any better on it. She asked me to do another 3 months and speak to the nurse then.

I did another 3 months and had a phone appt with another nurse, and told her the same.

She suggested I speak with the consultant in 3 months time. - This should have been at the beginning of December 22.

I rang during December to be told that the department is a consultant down so there is a bit of a backlog and my name is definitely on the list for an appointment.

I have also bought up each time that the only side effect that doesn't seem to have gone away after a week or two is spots (maybe acne?) across my forehead and hairline. Each time they have not really said much about it, other than -if it gets worse tell us-. It's hard to tell if it is worse, as all these spots come and go, some are painful, some are just in awkward places etc.

I work full-time and can't deal with any of this during office hours which makes calling them a bit of a pain.

Should I be pushing for the appointment, should I be ringing them to chase them? Should I be calling the nurse line and pushing the fact I still have these spots and the medication doesn't seem to be working?

As someone who has always pushed through when I don't feel great, I have no idea if my 'aches (I wouldn't say I'm in pain, but I can feel every joint and am uncomfortable)' are worse and I have a high pain threshold, or whether this really is mild.

I don't know if my aches are to do with whatever arthritis I might have or whether it is to do with the hypermobility. - I know that I do as much as I can for the hypermobility, I have had physio and they are happy with the exercises and things I do. I also am moving about throughout the day and take the dog for a walk at least once a day.

Thanks in advance for reading all that!

[Esmereld]

Can you call your consultant’s secretary?. Maybe he/she could get you an appointment.

[Bowtruckle in reply to Esmereld]

it was the department secretary that I spoke to back at end of November. I left a message last week asking for an update, but not had a call or message back

[summer32A]

I was left from Dex 21 and dec22 to be hurriedly seen after a pain problem by a locum who said yes severe spinal degeneration no disc at L5. S 1And we will discharge you to pain clinic!!

[Bowtruckle in reply to summer32A]

that’s really terrible. Shows just how much they are all struggling to cope.

[oldtimer2]

I think you should be politely letting them know your worries and asking for an appointment for review. There is a natural tendency to postpone decisions and appointments unless someone contacts them, and keeps contacting them.

[RAGuy]

I think you should be asserting to them that you are not responding as intended and you need to see a consultant. If they are short of doctors they will quite naturally only see the patients who most need an appointment. They will judge this by who is asking for help the most. Be strong, you have the right to see a consultant and deserve better.

I hope you are able to see someone soon

[Mmrr]

Personally I would be asking for a quicker appointment, stating that you have waited long enough. An email to the consultants receptionist usually gets a prompt reply. Tye hospital should be able to give this to you if you don't have it. If you accept poor care, that's what you get, so polite but firm.

[Bowtruckle]

Thanks all. Didn’t want to make a nuisance of myself, but will if I need to.

Definitely hard to keep going, I’ve already had to fight with lots of docs re the b12 and getting enough injections. I do my own now.

Not sure I’ve got the energy to do it all again with something else, but Will just have to keep calling.

[Luludean]

o Bowtruckle . I can’t help but I do SO sympathise. For all the kind advice it seems one gets nowhere with rheumatology. It wears you out !!! And, if you have any other illnesses to juggle you are doomed!! I am worn out too so know how you are feeling. Virtual hug.

[Seatgeorge]

I tried the hydroxy, soon stopped I had terrible flashbacks and God knows what else, as well as feeling really tired, I read the leaflet that comes with the drug, very interesting, good luck and do pester them otherwise nothing changes.

[Bowtruckle]

Finally got through to the receptionist in Rheumatology today (boss went out so I managed to sneak a call in during the daytime rather than on my lunchbreak).

But all she could tell me is I am on the list for an appointment. One hasn't been made yet.

When I asked how much longer it is likely to be as I didn't think my medication was working at all and I needed to see the consultant, I got the vague - Hopefully not too much longer.

🙄🙃