Pneumonia injection

[patsymay13]

Hi to everyone , I am another newbie to this site and so grateful that I found it as I have been reading and learnt so much in just a few weeks,You all are so brave, I had never heard of RA until last December after going to see GP to get some pain relief after suffering with such bad arm, shoulder and neck pain , thinking I had pulled it somehow and stiff and swollen fingers which I had put down to carpel tunnel which I had suffered for a couple years, my gp asked me a few questions prescribed some naproxen and was very insistant that I had some blood tests (so pleased he did), went back a week later for results expecting all to be well and he told me that he was going to refer me to a rheumatologist as my bloods were high, I was shocked to say the least, anyway fastforward to jan 11th when I saw consultant who examined me and gave me steroid injection which is now 5 and half weeks ago still feeling good at the minute, he put me on hydrocloxy 400mg daily, and sent me off for hand/feet and chest xray, my next appointment is with rhumy nurse in a couple of weeks, I just wondered if I should now go and get a pneumonia vaccine in case I get put on anything stronger if so where do I go for this vaccine is it gp or chemist, or do I wait and see what rhumy nurse says, sorry to be long winded it has taken me a few days to pluck up the courage to write this..

[nomoreheels]

Hiya patsymay13, welcome. I'm sorry you've had need to join us here but pleased you've found it helpful.

Re pneumonia vaccine, I'd ask your Rheumy nurse first. Whilst it's recommended we all take up the annual flu vaccine it's not always necessary to have the pneumonia one. Hydroxychloroquine isn't a particularly immunosuppressive DMARD & personally it wasn't until I started leflunomide (9 years post diagnosis) that I was asked to request it from my Practice Nurse & I'd been on HCQ, methotrexate & sulfasalazine until then. I appreciate you may be thinking of the future but your Rheumy nurse is best placed to answer your query, as she/he will be for most things RD related.

Just one other thing. You don't mention having an eye test prior to starting HCQ. If you weren't asked to arrange by your Rheumy please do so, & annual thereafter for as long as you remain on HCQ.

Hope this helps. I hope you do well on HCQ, it was my first DMARD too.

[patsymay13 in reply to nomoreheels]

Thankyou NMH for your reply , I am at the opticians next week for a normal eye test but I actually do suffer from ocular hypertension so have 2 x yearly visits to the hospital eye clinic , so hopefully I have got that covered, I will wait and speak to the rhumy nurse about any vaccine, I am hoping that the HCQ works for me as well I suppose I just don't know what to expect , reading along the lines of some posts people are still in a lot of pain even though they take these medicines so it looks like I got a lot to learn, is it the nurse who changes the meds or is it when you get to next see a consultant...again thanks for the reply and this forum does help with me stop feeling alone, I just cant believe how ignorant I was of this disease....

[nomoreheels in reply to patsymay13]

If you inform those Optometrists & Opthalmologists you see that you now also take HCQ then they'll be aware to check.

Do bear in mind that forums are generally used by people having problems & the newly diagnosed like yourself & who decide to continue using the sites. I'm reasonably well controlled, can't say I have uncontrolled pain but I do take meds to cover that. As I also have OA some of meds help ease my RD pain too. There are quite a few of us here who are doing well but we're in the minority. Most people with RD are getting on with life, no need for forums so it's not representative, there are many more doing well than not so don't fret.

It can take a little while to get RD controlled, there are no quick fixes I'm afraid, except for steroids which can given immediate relief but they don't treat the disease only the inflammation & limited to how many we can have annually. There are also steroid tablets (corticosteroids) but again not generally used long term if it can be avoided, more often to bring down a flare. There are better meds to help as you know having started one, DMARDs are the first line treatment.

Generally speaking it's your Rheumy who formulates treatment & prescribes but if you have a Prescribing Nurse Practitioner they can prescribe in their own right but only within their competence so may need to refer to the Rheumy. Your GP can prescribe some meds but only those which aren't Specialist meds, so he can prescribe things like NSAIDs & pain relief but may wish to refer to your Rheumy as well before doing so. All these you can double check with your Rheumy team. I'd write a bullet point list of anything you'd like to know on the lead up to your next appointment. Time is usually limited for Rheumy appointments & they're often so busy they don't always keep in mind you're newly diagnosed & this is a big deal to you. It's good to question, self advocacy in RD ensures you understand your disease better. It is a lot to take in so don't worry if you find you're needing answers to your questions, early days for you, some of us here are old hands at it!

[patsymay13 in reply to nomoreheels]

Thankyou for your knowlegeable reply, I will write a list out of things im unsure about and hope to get some answers trouble with me is I tend to not push things and I never visit my gp until my oh moans at me to go , but my mindset is now changing to this, thanks for the advice about optical ....

[Pinkypie2018]

My first app was similar to yours also in Jan although I wasn't started on any treatment I just received the steroid injection an had xrays. Isn't it great how the injection helped? Anyhow I was diagnosed yesterday with psoriatic arthritis an only then was I advised to go an get my vaccines as I'm starting methotrexate next week. It would do no harm in maybe ringing an seeing what your rheumy or gp thinks. I was told my nurse at gp surgery would deal with the vaccines.

[patsymay13 in reply to Pinkypie2018]

Thanks for that pinkypie, I take it you must have been to see your rhumy people already ,did you ask them lots of questions or do they give lots of advice, this is a great place to get info isn't it , is your injection still working, it is so nice not to have to keep reaching for the painkillers at the minute good look with ur meds....

[Pinkypie2018 in reply to patsymay13]

My app yesterday was awful I wasn't given a chance to ask any questions an the only advice I received was about the methotrexate. Honestly I've learnt more on this website compared to what the so called experts told me. My first injection only lasted 4 weeks an I took a bad flare after it. Received another 1 yesterday an I'm already feeling the benefits. Hopefully your rheumy explains everything better to you an I know you get so frustrated taking so many painkillers, but we do need them. An thank you hopefully the methotrexate does agree with me as you read so many horror stories, but I've read so many good tips on here about it.

[patsymay13 in reply to Pinkypie2018]

sorry to hear that your appointment wasn't good its not what you need at all ,also it is a shock to be told that you need to take tablets from here on but so many people have good results aswell so we can only hope that's how its going to be , I used to feel good at my dental check ups when they update there records each time and I could say no I don't take any meds, gonna be a bit different from now on but I trying to stay positive as I often think mind over matter....

[Millysmum]

Hi, and welcome.

I've only been diagnosed since May last year, I'm on methotrexate and hydroxy. I had a phone call from doctors surgery 2 weeks ago, saying I was on the priority list for the pneumonia vaccine. I was surprised as only 46, but went in and had it. I believe its a one off jab. So I'd say 1st port of call ask your gp. Nice easy jab, no side effects. All the best x

[patsymay13]

Thanks for that Millysmum, how are you doing on your meds are you getting some relief , so many of us isn’t there ....

[Mmrr]

I'm sorry to hear of your woes. my rheumatologist advised the pneumococcal vaccine. I asked my GP who was happy to give it to me. its a once off vaccine, no need to redo next winter.

[patsymay13]

Thankyou for you reply Mmrr , most helpful....