Edit :Thank you for all of your replies, they've been super helpful and I don't feel as alone in this! I was so stressed out during my initial consultation I may have missed this info im asking about.
Good morning lovely people in my phone! I was finally diagnosed with Primary Sjorgens Syndrome in July, given Hydroxychloroquine and told 'see you in six months' .And that was that.
Is this a normal thing to just be left twiddling your thumbs? (when they aren't swollen 😂)
I'm obviously not expecting weekly check ups but nothing at all? No phone numbers, support at all.
I see that you guys are chatting to your rheum nurses, having interactions, physio etc and wondered if I have missed or no RA= no extras.
Incidentally if anyone has joined the BSSA/ British sjorgens syndrome association I'd like to know your experience behind their pay wall please.
Many thanks for your time reading this what on earth am I to do now post!
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Why don’t you phone your Rheumatology department & ask for the extension for the rheumy nurses…. then you can have a chat & ask any questions that you have?
We have to be very proactive post Covid, & I think most people you see contacting their Rheumy nurses had formed their contacts with them pre pandemic.
But your original question……are we just left twiddling our thumbs, I’m afraid the answer these days is probably Yes.. Quite a few of the Rheumatology Nurses were moved to Covid care and just never came back…rheumy departments are now running on Skeleton staffing.
It looks like your consultant wants you to keep on Hydroxy for 6 months, & .you will then get an appointment to discuss how it’s working. It after the 6 months is up you don’t hear anything….give rheumy appointments a call,& explain you need an update.
Sorry not to have more hopeful info..but if your prescribed meds are helping- hopefully, you won’t need more than 6 monthly check ups.
This is very helpful, I will do that. Thank you so much. I was so stressed out and panicking during my initial appointment I may very well have missed out on this information being explained.
You could try calling or emailing your consultant’s secretary (their number / email address may be on copies of letters, if not call the main switchboard and ask for it) and asking if the department has a nurse helpline and if so how do you contact it. Most rheumatology departments do offer this service but some are better than others.
I agree with others, that these days we need to be proactive. Due to waiting lists getting longer, most departments are reducing frequency of appointments when able to. Many are now doing “patient initiated follow ups”, where the patient gets in touch when needed. They probably plan for you to try your med for 6 months, then they will review. All these meds take time to work. If you do have any issues you need to discuss, then contact the secretary and she’ll put you in touch with the nurses. If you feel you need physio, she can speak with your rheumatologist, although most areas can self refer for ohysio. I have severe adrenal insufficiency, my specialist is in London, my last appointment by phone was 2 year ago, all others have been cancelled and rescheduled. Hopefully I speak with them in 2 weeks. Personally as a nurse I understand the pressures, and don’t mind, I know if I get in touch with my endo she’ll get back to me. With my endo I have to send an email to a central email, who forward it on to her. Less frequent appointments, means someone waiting for ages for that first appointment and potential diagnosis can be seen. Please contact them re any concerns you have, they will happily help.
it’ll take that long for the hydroxychloroquine to do it’s work. In the meantime see someone about your eyes if they are involved and if you have Facebook join the forum, people there can help out with any other symptoms you have. Have they advised you about pain relief for your hands in the meantime?
Thank you, yes I've been given diclofenac twice a day on top of the hydro.I'm already seeing different from taking the hydro after 10 weeks My biggest problem is being stubborn because I used to be so creative and thinking I'm 21 again. My eyes are okay, I have a flare up about once a week at the moment which Celluvisc works for. I'm balancing pain relief with trying to be more active which is harder than I thought it would be with the fatigue and weight gain. I'll keep fighting !
From my own experience, all parts of the NHS have reduced, more drastically since Covid. As an example, I put in a request to GP via the online non-urgent messaging system (5 days to reply) asking for dry mouth spray on 3rd August. New dentist had suggested it and I had been thinking of asking for a while. 2 weeks later no response so requested it again but still no response. Then emailed Practice Manager, no response.
Saw Rheumatologist F2F after 4 year wait on 20th September. Told him of the difficulties with dry eyes & mouth and requests to GP ignored. He included in his letter to GP that he had prescribed a new eye treatment and dry mouth spray and that I might ask for repeats if they are beneficial. However, after waiting half an hour for new prescriptions at the hospital pharmacy, was told both items were out of stock! I asked what should I do, can I have a paper prescription and the answer was no, they would notify the Rheumatologist.
Expected this wouldn't happen so booked a F2F with GP (another new one) who went to ask another GP what he should do. No Consultant's letter at this stage as only 2 days after appointment. Luckily, the other GP agreed to issue the 2 new items and sent the request electronically to my local Pharmacy. After a few more days wait, items finally picked up.
All in all what ought to have been a maximum 5 day request to GP and collection from Pharmacy ended up taking 7 weeks involving Rheumatologist, 2 Pharmacies and 2 GP's. Ridiculous!
Good god, that's atrocious! I'm so sorry that happened. I'm very lucky the practice I'm at seem to be excellent at their jobs. My eye drops prescription was bounced back from boots because they couldn't fulfil it yesterday. I went to my surgery (it's 5 mins away) and the practice manager sorted it for me there and then.She emailed a complaint to boots as they lied about the reason they refused it,blaming the surgery when it was Boots error. I had to walk about a bit to find another pharmacy but picked it up a few hours later. That manager takes no prisoners!
Our GP Practice changed hands in April, giving just 5 weeks notice to 6,500 patients. The village Pharmacy can barely cope now that the Agency running the GP Practice don't have any Pharmacy for patients living 2 or more miles away. On top, the 3 day wait has increased to 5 days and prescriptions are often not ready by then and now they've announced they will be closed on Saturday mornings!
Were you given blood work papers to follow up with blood tests? I am given two each time one three months after appointment the other a week before next consultation so they can check in on me 🌈
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Your support really helped!
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