Newly Diaganosed.

bluejay6497

Hi DD I hope you had fun with your tree yesterday. I won't be putting one up this year I just can't be bothered to be honest. Anyway had the Rheumatologist nurse phone me today. She wants me to take the 2 tablets of folic acid sometime today and I have an appointment in clinic at 2pm tomorrow for my very first injection. I am more than anxious to say the least but i know i have no choice. I will let you you know how i get on over the weekend. Wish me luck

BJ

[Deleted User]

Hi BJ
the moderator team will be thinking of you tomorrow. Lots of luck
Best Wishes
Sharon
christmas01

bluejay6497

Thank you Sharon that means so much.

dibdab

Hope the injection goes well. Just to encourage you, injecting meth carries far fewer side effects, it certainly helped me. I soon learned to do it, I think I did it twice with the rheumy nurse supervising then I was free to do it alone at home. It really isn't as scary as you think once you get the hang of it.

Good luck.

Deb x

dreamdaisy

The FA is a supplement and will do no harm - I will be thinking of you tomorrow and I am sure all will go well, please let us know how you get on. DD

PS I not only played with my tree I bought a second one for the kitchen. What amazed me was that it was my husband's idea - he is a fully paid-up member of the Bah Humbug brigade!

bluejay6497

LOL you cheered me up then DD with Bah Humbug ! I have now taken my Folic Acid ready for tomorrow I will keep you all updated over the weekend how i am feeling. Hopefully things will be ok for me. x

dreamdaisy

I hope it all went as well as possible. DD

bluejay6497

Hi DD I had my first MTX at 2 pm this afternoon. I'm feeling ok at the moment but I know I will just have to wait and see what happens.

dreamdaisy

I'm pleased that so far you are feeling OK and I am sure that will continue (mind you that's my usual take, I'm not one for sitting and waiting to feel ill). Was it as bad as you feared? DD

bluejay6497

The injection was fine didn't even feel it DD My main worry is side effects but like you said there's not much point brooding about it. I suppose tomorrow will tell.

dreamdaisy

I'm still waiting for the biggest side-effect of all - for the meds to actually make a difference I can feel. For reasons too dull to recount I didn't begin any medication until I was five years in by which time the damage was done and has continued with the development of osteo arthritis. When I first began attending rheumatology some of the patients were a sight to behold: the various lumps, bumps and oddly-angled floppy fingers were an eye-opener. Now I am the one who stands out because I usually have either my rollator or a stick whilst everyone else strolls in and out of their appointments with ease, not a joint deformity in sight. I am convinced that the quicker the diagnosis, and the sooner one begins the meds, the better the outcome will be: I have seen it with my own eyes and I sincerely hope the same will happen for you.

I thought of you this morning as I did my meth - I said to The Spouse 'Ah, there's nothing like starting the day with a little prick.' 'Yeah, I'm sorry about that,' he replied. DD

christmas01

PS I received some new Christmas tree baubles yesterday including a glass burger with a packet of glass fries. They are so ugly they are beautiful.

bluejay6497

Aww DD you do make me laugh. I am so glad we met you are lifting my spirits more than you know You make me feel like I'm not alone going through this. Thank you for that. Nearly 24 hours on now from my first jab and so far so good. I did feel a little light headed first thing this morning and that as worn off now. I did manage to do some shopping this morning with my hubby so that was nice.

dreamdaisy

Hello, how are you feeling? As we haven't heard from you dare I presume that all is well? I hope so!

My very traditional Christmas tree (a dark green seven-footer that is adorned with 1200 lights and numerous Santas) now has a new addition - The Freaky Friday Collection. I spent a happy Sunday afternoon rearranging matters so the bottom layer of the tree now contains the burger and fries, a cactus, a zebra in a tutu, a couple of llamas, two crocodiles (one a girl as she is wearing red high heels, a pink hat and a string of pearls and the other a boy who is scuba diving), a skiing reindeer, a ballerina frog, a couple of flamingos, a very elegant frog with pipe and walking cane (most appropriate!), an elephant, a chicken and Humpty Dumpty. All glass. All naff. All delightful! DD

christmas05

bluejay6497

sounds more like a zoo than Christmas tree. I am not to bad at the moment thanks DD. I have quiet a lot of pain in my shoulders and biceps. which is a bit grim at the moment I am trying very hard not to dwell on things and stay positive. My lovely husband bought me a new recliner chair last weekend it has made a big difference, i can get up more easily now. I hear a lot of people talk about Remmision. Is this when you have no pain at all or does it just mean it's not as bad. ? I am creeping closer to my second injection of MTX on Friday. The first one went fine but i was wondering if i had to have more of it before any side effects show. I hope not, do you know what happens with this drug at all. Had a phone call from my Dr surgery yesterday apparently my Dr wants to speak to me so Have a telophe appointement with them on Friday I have no idea what that could be about. ! Thanks DD for checking in on me it means a lot to have your support.

dibdab

Hi there,

I was wondering how things were. I'm sure your rheumy team will have mentioned it, but it takes several weeks for the methotrexate to really get on top of the inflammation and calm things down, so try not to be despondent if the improvement isn't immediate. As for side effects, with meth mine happened very quickly, and I'm told they settle down over time as our bodies adjust.

An understanding and supportive hubby is an absolute treasure, sounds like you have a good one! Mine is wonderful too, though inclined to be a mite over-protective on occasion. I really like my riser-recliner chair, sometimes when sleeping in bed is too painful I hunker down in my recliner with a spare duvet and a hot water bottle and pack myself around with cushions to rest sore arms on-it's more comfy than bed when I'm restless and miserable. Does warmth help your sore joints? I have a collection of wheat packs of various sizes and shapes that heat in the microwave and are quite soothing-I occasionally take one in the car on a longer journey to rest my wrist/elbow on if it's really tender.

If you aren't already taking anti-inflammatories (ibuprofen/naproxen etc) you may find a gel like voltarol or ibulieve rubbed into the sore shoulders will help-though unless you're a contortionist that helpful hubby m at need to assist! .

Keep focussing on the cheerful stuff, it really does help, and let others help you, it takes the pressure off you and lets them feel as if they're doing something good too- that's perhaps the lesson that took me longest to learn but has made a big difference to how I coped when I was still teaching- my classroom assistants were an absolute Godsend on the bad days-and they were always ready and willing to do the stretching and carrying that I struggled with-one of them just had a knack of knowing when I was feeling low and arriving with a mug of tea and a biscuit to cheer me up and it made such a difference not having to hide how I was feeling on the bad days.

Sending positive thoughts your way.
Deb xx christmas01

bluejay6497

My Rheumy did say MTX took a while to work but I'm still a bit apprehensive about the side effects. I'm Hoping because the first one was ok the second will be to. . I use a hot water bottle on my joints I find it very soothing and comforting. I also have ice packs which are good to. My Hubby is fantastic he as made it his mission to look after me. so I am very lucky there. We have been married for 36 years now and I still love him with all my heart. He is my best friend and soul mate. Unfortunately a lot of people with this dreadful disease aren't as lucky. Although we haven't put a tree up this year we will still have a good Christmas with family and friends and hopefully as pain free as possible.

dreamdaisy

Remission - I think that's as common as the Holy Grail. I believe it is caused by disease activity coming to a halt but whether naturally or due to the meds I do not know. As I see it the forum is populated by arthritic diehards, we are the ones resistant to the meds (or, as in my case, too late for them) so that is a goal beyond our capabilities. I recognise that my disease is under control (and that's as good as it gets for me) but it's still there, it's like having a dormant volcano slumbering away inside. I have heard rumour that RA can burn itself out but none of the others (yet another health bus I've missed ) For those who are doing well they probably haven't even looked for a forum because they have no need to tell people how well they are doing - misery is far more newsworthy. In all the years I have been on here I know of one person, williamlargs, who left us because 5mgs of meth was doing the job very nicely so it can happen.

I still strongly maintain that the quicker the diagnosis and the quicker one begins the meds the better the outcome can be. Keep that thought in mind, yes? DD

bluejay6497

Grace thank you so much for your advice. This is all very new to me. It all started at the end of October this year. I am trying to learn as much as i can about RA and the best way to manage it. I have had some really bad days physically and mentally trying to come to grips with it. This forum and all the lovely people have helped me immensely I would be lost without you. Thank you for sharing with me your experiences Grace it is a comfort to know there is always someone listening.

Inflexible

I want to thank you all too. As a relatively new sufferer, I have found this thread absorbing and of course have found a lot of parallels in my own situation, some very philosophical views expounded here and I'm grateful for them. I like to have a realistic outlook.

I'm at week 12 of my meth treatment (20mg/week) and am unsure whether it's having any real affect yet, I think it must be. I had my last depo-medrol shot about three weeks ago and am completely off oral steroids ... mornings are hard and my hands very painful, but I improve as the day goes on, I can literally feel things unlocking. I see the consultant on Friday and I'm thinking that if my bloods are OK she'll turn me over to my GP.

Thank you again.

daffy2

My very traditional Christmas tree (a dark green seven-footer that is adorned with 1200 lights and numerous Santas)

Lawks a mercy girl, at that rate they'll be able to tell in the Sizewell control room when you've switched your lights on!

dreamdaisy

Hello MartynP, just a quick comment: once one is under rheumatology's auspices one stays there, GPs do not have a role to play when it comes to meds such as meth and other DMARDs etc. that may become involved. They can help with pain relief and other issues that will still arise (hey are also good at getting fretty about blood results that don't upset rheumatology - see one of Hobble's threads) but auto-immune arthritis is not in their remit.

Daffy? Tree No.2 in the kitchen is a six-footer with a mere 500 lights. The two outdoor pre-lit trees in the back garden total 144 lights, and the arrangement in the front 200. All are LED so hopefully not breaking Mr DD's bank to run! DD

christmas01

Inflexible

dreamdaisy wrote:

Just a quick comment: once one is under rheumatology's auspices one stays there, GPs do not have a role to play when it comes to meds such as meth and other DMARDs etc. that may become involved. They can help with pain relief and other issues that will still arise (hey are also good at getting fretty about blood results that don't upset rheumatology - see one of Hobble's threads) but auto-immune arthritis is not in their remit.

Daffy? Tree No.2 in the kitchen is a six-footer with a mere 500 lights. The two outdoor pre-lit trees in the back garden total 144 lights, and the arrangement in the front 200. All are LED so hopefully not breaking Mr DD's bank to run! DD

christmas01

Thanks for that Daisy, I must have misunderstood - I sort of got the impression from the rheumy nurse that once I was "stable" on the methotrexate they turned the prescribing over to my GP. My bad, sorry.

stickywicket

MartynP wrote:

Thanks for that Daisy, I must have misunderstood - I sort of got the impression from the rheumy nurse that once I was "stable" on the methotrexate they turned the prescribing over to my GP. My bad, sorry.

They kind of do, Martyn, but kind of don't My GPs have always issued my prescriptions but the GPs can't alter the dosage or the type of DMARD.

dibdab

Like SW my GP issues routine prescriptions for meds, but not the methotrexate as the hospital send that directly via a company called Health Care At Home, who deliver it to the door together with sharps boxes etc, and take away the filled bins too. My GP does my sulphasalazine, Hydroxychloroquine and Leflunomide prescriptions, all DMARD's according to instructions from the rheumatologist under what they call a 'shared care' agreement, they give me pain relief too. They also do my routine blood monitoring which both they and the rheumy team see and call me about if something is amiss! :?

This rheumatology lark is utterly baffling at first, but I promise you get used to it, and where to go to ask for what.....if all else ask the old hands on here who can sign post based on their experiences.

Deb x

Hobble

Hi bluejay,
I was diagnosed in September and started methotrexate in October. I've been reading your thread as suggested by dreamdaisy as I'm going to be on the injections in a couple of weeks because of the side effects of the tablets. They have also increased the dose so only one lot of tablets left to take.
The thread has answered many of the questions I've been thinking about which has helped, so thank you all
I would be lost without the forum

Hobble