Not well at all friends, Part 3

[Jeanabelle60]

Before I begin I once again want to thank all of you for your supportive words, your shared experiences, educated advice and not forgetting kisses and hugs, thank you all so much.

Well yesterday my 92 year old Daddy drove me to the Rheumatology Ward, I had my eyes closed for most of the journey, bless him. I'm unable to drive due to full body pain to see my nurse angel, Bronagh. She was waiting for me when I arrived. We chatted for a while as she wanted to know everything about what had been happening to me over the past few weeks. She went then and got me a double dose of whatever you call the steroid that is injected. She said I was in a very bad way but that she had seen me worse, just the once though.....back when I had to be off all meds before going on Bio's, that took nearly 9 months as I had to wait for funding, I'll never, ever forget it. She reminded me too of the first time I came back onto the ward just after I was on humira and feeling great. I spoke to her but she didn't know who I was! She hadn't a clue who I was she was so used to me bent over in the shape of a question mark!

We talked then about where we go from here. She said that I had enough steroid in me to keep me going, hopefully, for the month of September. After that I will go back to the clinic for a 'tester' of Gold to see if I will tolerate it.......I don't have a great history for tolerating treatments.......so we'll see what happens.

They she went onto the thorny subject of 'me and Prednisolone'! I hate them, she knows I hate them and what they do to me......they make me clean crazy is what they do, even the smallest dosage of 7.5 leave me manic and bouncing off walls. She told me straight that if I didn't go back on steroids I would go back to the way I am now......."the choice is yours".......she can be stern when she wants. With no where else to turn I reluctantly agreed to go back on the dreaded Prednisolone while waiting to start the Gold injections. The hope is the Gold will work and I can come off the steroids.......not holding my breath.......I have a terrible history.

To put things into perspective Bronagh told me a bout a wee girl of 20 who is the only other patient she knows of with the same history that I have. 20 years old, imagine.....made me think. I'm 66 and thought I still consider myself 'young' this wee thing is 20 and should be out with her pals enjoying life. I had my time doing that, this poor child is being robbed of her chance to live her young life........there is always someone worse off isn't there?

So that where I stand now. When I opened my eyes this morning I knew my pain had reduced.....it is sort of 'blotchy', here and there if you know what I mean. My upper body still isn't strong enough to drive but I'm hoping over the weekend it will improve.

One more thing before I end this sage......Bronagh told me that the reason it would be the end of September before she could see me again was because she was the only specialised Rheumy nurse on duty in the clinic. There are normally three, one is on maternity leave and the other is off sick so she is doing the work of three specialis nurses. So the next time you hear some one having a go at the NHS remember my Bronagh keeping the ward open on her own! Our health care staff are second to none, IMHO.

All being well the next time you hear from me will be after my cruise........ill have a drink on all my friends here on NRAS. XXXXXXXXXXXXXX

[weathervane]

I will keep fingers crossed that all goes well for you . Have a lovely time on your cruise- v jealous!!!!😀😀

[Jeanabelle60 in reply to weathervane]

Thanks weathervane, I'll do my best. It's great not have sore fingers from typing or even touching the screen. I'm so much looking forward to this holiday. I was always an independent traveler, backpack and off I went, staying in hostels and meeting all sorts of interesting people on the way. But, my running for trains days are well and truly over so I gave in and decided it was the way to go for me. A day here and a day there would have to suffice. Health issues allowing there are always great city breaks through out the year for allowing you to see about a place at your leisure.

Anyhow my brother and I intend to 'rock the boat' a bit and take advantage of the drinks package........only problem is neither of us can drink the way we once could.......but well a good go at it! All the best, J. XX

[weathervane in reply to Jeanabelle60]

You will have great crack and you wont have to worry about the cooking and cleaning!! Sounds like heaven😀😀🍾

[Jeanabelle60 in reply to weathervane]

I know, heaven! X

[farm123]

My body is also fussy over meds but Gold was one I tolerated and worked for around the 7 years so hopefully it will give you a new lease of life. 2 years ago when we were struggling to find something to work it was among the suggestions of what to try next although the saying used to be that it would not work after a break. Fortunately for me unlike you Abatacept worked although it took 9 months and my WBC and Neuts are very low. Have a good holiday and hope the steroid will give you enough to enjoy it. Farm

[Jeanabelle60 in reply to farm123]

It's great for me to hear about success stories using Gold. I forgot to ask if I have to stay on the dreaded Prednisolone while getting Gold. I was told that it can take some time before it actually works. It took months for some of the Bio's to work so I I won't expect too much too soon. All the best, J.

[rawillbebeaten]

Hello, I've been on a high dose of steroids for most of this year due to a flare effecting my eyes and then the nerves in my feet and legs. They are a necessary evil short term and I am reducing down now thank goodness. I've put on a stone in weight and have the awful puffy moon shaped face. Glad you have had treatment enough to mean you enjoy your cruise. Fingers crossed for the Gold Injections - I'm going to have another 2 Rituximab infusions and hopefully that will help the nerve issue as only taking Gabapentin as well as has made me be able to come out of constant pain and get some sleep.

Have a fantastic time, eat drink and be merry

Michele

[Jeanabelle60 in reply to rawillbebeaten]

As I said I'll have a go at it. I haven had a holiday since I was diagnosed 5/6 years ago, I can't remember for sure but it was soon after I turned 60. No matter, we have booked a balcony and intend to take advantage of it and have a nice congac watching the sun set in the evening. Mostly I'm looking forward to the water slides......I know, I know......at my age......well I don't care if I'm physically fit I'll be doing both of them........several times! Hope it goes well with the Rituximab. XX

[Matilda_1922 in reply to rawillbebeaten]

What are the symptoms you have for the nerve pain. As I have shooting pains in my feet. Just wondered whether this is a sign of nerve pain.

[rawillbebeaten in reply to Matilda_1922]

Hi Matilda - it sounds like it could be. I would speak to your GP and Rheumatology and get seen and assessed.

Mine started in Feb as pins and needles and then got more severe, constant pain with flares of shooting pains and like electric currents twitching my feet. I couldn't sleep for 4 months but Rheumatology/GP didn't think it was serious. Then I got a really awful pain in my whole right leg and hip and numbness for 24 hours, this was the RA attacking the nerve and I now have a foot drop. The muscle in my leg isn't getting the signal to move upwards. Things are much improved now but far from right. I've been have Reflexology and I think that has helped and it's very relaxing. Gabapentin has sorted out almost all the pain and the RA is getting back under control. The consultant I see has described this year as the RA building up a storm, my eyes were effected in Jan, then I had a Rituximab infusion in Feb which was planned because of changes in Medication and others stopping being effective. He feels that the Rituximab has stopped things getting even worse (bad enough from my side!) and that I need another set of two infusions. So that's the next plan for me.

Hopefully yours is a short term thing. My RA is and always was very aggressive and needing lots of strong meds to keep it down, so that's why the changes have caused me so much trouble.

Hope you get the pain sorted out

Michele

[rawillbebeaten]

Thank you, I hope so too. Been a complicated year so far health-wise but it is improving

I love a cognac as well, enjoy enioy enjoy.

Water slides - go for it - fantastic

All the very best

Michele xx

[Jeanabelle60 in reply to rawillbebeaten]

Thanks darlin. XX

[nomoreheels]

Aw Jean lovey, I've not been around for all sorts of reasons & just caught up on each of your latest installments. I really really hope the steroid injection sees you through to your hols & beyond so it allows you to relax & take full advantage of the drinks & waterslides (preferably not at the same time, you don't want to be spilling more than you drink even if it is free!). You may have said, though I don't recall, but where is it you're bound on your cruise?

Hopefully you'll find a compatible pred dose that keeps you from bouncing off the walls yet helps & let's hope that you respond well to the gold injections with no unwanted side effects when the time comes. I'm still on my low maintenance dose (3mg but not pred, I take deflazacort) & I have another appointment with my Rheumy nurse tomorrow though doubt she'll sanction tapering off them so next time I see a Rheumy or SpR I'll try again. I'm being a bit of a wimp about it but I know from past experience what happens towards the end of tapering so really want the support to try again & have a plan in place for when the inevitable happens. By the way I tried gabapentin & it did nothing for me either. I got up to 1800mg a day & still nothing so my GP agreed it wasn't going to help so I tapered off it.

I hope you'll start to feel better each day, I'm sure you'll soon be up to walking Barney & Kells again soon. Take care. xxx

[Jeanabelle60 in reply to nomoreheels]

Awh heels (laying my head on your shoulder), where have you been? I've been through hell but starting to emerge again. Still can't drive but hoping by Monday I'm going to be able to take my beloved Barney & Kells to the riverside park that they love so much. Breaks my heart seeing them move from one part of the house to another, bored out of their wee heads.

These bloody steroid tabs, they can be sooooo good but the down sides are just awful aren't they? Test for the gold on the 26th of September anyhow so life goes on. I did what we all tell others not to do.......I had a look at Dr Google regarding gold injections.......I may as well shoot myself now and be done with it!!!

Hope all goes well for you, you are so lovely, thanks for your reply. Jean XXXXXX

[sylvi]

Our rheumy deptpartments in both our hospitals are so overwhelmed with patients. Now don't get me wrong when i say this but cancer gets so much publicity and yes it is a cruel disease,but with cancer you either recover or die(and i am not taking anything away from them) with us it is never ending and we will never recover from this and it doesn't always come on its own either. Your lucky to have a good nurse and they are few and far between and they don't get praised enough. Mine has been off the ball laterly and she is a brilliant nurse and she has her own health issues as well.My consultant is staying at our other hospital so i will be getting a new consultant by the new year. So that means we will have to go through it all again.

Now my rant is over and i hope your steroid injection gives you a long time feeling brighter. Hugs from me and sorry for the rant.xxxx

[calamityjane1971]

Can you get any more Biologics? Could you discuss that at your next appointment? I'm at clinic next week to discuss biologic number 7, yep 7. Steroids are sometimes a necessary evil, a small dose at 5mg could help & not give you a hard time.

Enjoy your cruise, I love my cruises, especially as they cater so well for me & my wheelchair!

[Someonesmother]

Well I hope it goes well with the gold. I was down to that as a last DMARD but didn't have to try it as they let me try biologics. So I hope it works for you, I would be interested to know. Where I am in Oz there is only one Nurse practitioner for the whole hospital and all the surrounding regions. I have no idea how she does it all.

[Hidden]

Oh my I am crying for you. Stay strong. Keep hope in your heart that the medications will kick in and soothe your body. Keep young inside until the body allows your youth to come out again.

[summer32A]

gold worked for me for 18 months and I had remission but it stopped working, didnt give me any horrid side effects unlike methotrexate and sulphasazaline, I have been without treatment for almost two years as my drug choices are limited, I am not keen on trying arava due to side effects and I am already taking blood presssure medication, I Have reluctantly said will consider hydroxychloroquine if they can prove it is safe and wont affect my sight, I already have a rare retinal pigmentation condition, so would be difficult to monitor.

Hoping gold will be as good for you as it was for me, what sort of cute dog is in your piccie, I would love a dog, not one tat requires long walks or pulls on lead ,cos of the RA,