UPDATE - First consultant appointment &diagnosis

[Nelliekel]

Hello everyone

As promised update below.

(original thread if anyone needs a reminder) healthunlocked.com/nras/pos....

Consultant appointment today. Diagnoses of RA confirmed. He confirmed swelling in both ankles, wrists, knees, hands and feet.

Being started on 200mg of Hydroxychloroquine today & awaiting an appointment with a nurse to start methotrexate.

Feeling very overwhelmed. Appointment was at 9.15am, left consultant's office at 10am, had a steroid injection in my bottom then sat in the waiting room for 15 minutes, went and handed my prescription into hospital pharmacy & went and had my blood tests done. Left the hospital at 12.

Waiting for x Ray appointments for lungs and joints, appointment for the nurse for methotrexate, and another to try and drain some fluid from my knee and inject a steroid into it.

Also. I've booked an eye test for the hydroxychloroquine.

Phew. Didn't ideally want methotrexate as wanted to TTC baby 2, but being realistic I suppose I need to sort myself out first.

[JenniferW]

That sounds good, no messing around. When you get the blood test results, have a look through for vitamin D and see what your levels are like. No one told me to do that or mentioned my low levels.

I hope the meds work well. If you get a tummy upset or bit of diarrhoea with the hydroxy, try to persevere, I found the side effects lessened a lot after about six weeks. Also take the hydroxy and methotrexate with a good solid meal. The advice on the hydroxy instructions that a glass of milk will do is rubbish IMO.

[Nelliekel in reply to JenniferW]

Thank you! Funnily enough I've started taking a vitamin D supplement the past few weeks as I saw something when looking into RA, although its not prescription strength so will definitely keep an eye on it 😀

[Gnarli]

Yes, it is overwhelming at first but you have made massive steps towards a better quality of life. Unfortunately, the meds do take a while to start making a difference but, if you need pain relief, your GP should be able to help. Wishing you well

[Nelliekel in reply to Gnarli]

Thank you, yes. Up to 12 weeks I've seen, and that's assuming they do make a difference for me 🤞 they do.

[Boxerlady]

Sounds like a good initial appointment - very similar to mine, actually. Try to take it a step at a time; it can feel overwhelming initially but things will calm down as you get used to the processes. I found the nurse appointment better than the initial consultation as they're more used to the day to day processes but maybe also because I'd got my head round things a bit more by then and wasn't frantically trying to take in all the information at once. Hopefully they'll give you a telephone number for the nurse advice line - mine is great.

The important thing at this stage is to get the arthritis under control and avoid any joint damage, you can revisit the children issue in time. Presumably you discussed it with the consultant and plan to do so with the nurse? Nothing wrong with repeating it so they know that it's something which concerns you😉

[Gottarelax]

Thanks for the update. I does sound like they are getting you sorted quickly which is great. I can imagine that it all feels like it's happened so quickly. As you say, now is the time to get your illness under control. Hopefully you'll respond well to your medication and be able to consider pregnancy in the not too distant future.

[Nelliekel]

Thank you everyone. The thing that confuses me is say I go into remission or similar. Then I decide to try for baby 2... am I not just going to flare up again in the 6 months before that I have to come off it in? Seems very confusing.

[helixhelix in reply to Nelliekel]

One step at a time!

Get into remission first, then most likely a taper down of drugs to prepare for pregnancy and with care you’ll hold stable for quite a while. There is a small amount of evidence that trying to make your lifestyle perfect will help achieve that. So sleep, simple food, daily exercise, no stress, no smoking, minimal alcohol etc etc so your body isn’t triggered into flaring again.

[Belle76]

I was sulphasalazine and was being controlled but not in remission. I think I only had to wait 3 months before I could try for baby no2. I found that whilst pregnant I didn’t have any flares or pain etc but wanted to breastfeed so didn’t go back on sulphasalazine for about 6 months during that time I had flares and it was worse than before pregnancy. But I believe now they allow you to continue with sulphasalazine whilst pregnant, so you maybe able to change medication.

[Pulfs]

It can all seem overwhelming at first but glad they are sorting meds out for you. When you’ve been on them a while and pain and swelling has subsided you’ll feel a lot better and life will improve. Take care and hope meds work.I’ve had RA for over 25yrs and have coped well and my life is good , all down to the meds xx

[AgedCrone]

If you haven’t already.,,,,Do speak to your rheumy nurse now about Mtx/New baby ….no point starting a drug that is not advised during pregnancy…sort it sooner rather than later.

If you want to plan a baby now….try to get that across firmly.

[Happy5]

Ah I recall well the first appt I had mine got the diagnosis, & subsequent tests.They wanted to star me on MTX but I deferredas going abroad for few months.

Well that proved a mistake ended up bed ridden & needing to return to UK early.

Was seen 2 days after I got back by a wonderful RA nurse.

I was armed with my questions having had time to research & come to terms with

the diagnosis.

Left with new script & picked up the pills & started them. That was 11 years ago.

I'm now at the stage of knowing, accepting & adjusting to RD

Onwards & Upwards