Newbie

bros

Just a quick hello to all on the forum.
I am male 60 years old and have had arthritis for 12 years now(initially diagnosed as RA, recently changed to Psoriatic Arthritis last 2years)
I have been on roughly 7 or 8 different meds without success.
The only relief I ever get is with slow release steroid injections.
This roller coaster ride is starting to get me down big time.
Tbh, I am beginning to lose faith with all the Meds out there wonder what lies ahead.
I will stop this downer now as this is my first post on the forum, no one likes a moaning so and so and I do realise that there are many people much worse off than I.
Hope to interact with forum members and give any help that I can.
I'm sure I will have much to ask and hopefully learn.
Thank you
Regards
Bobby

[Deleted User]

Hello bros

Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

All best wishes
Mod Christine

stickywicket

Hello Bobby. Welcome to the forum and please don't apologise for needing to let off steam a little. Arthritis is a very frustrating disease and we all need to from time to time.

The exact 'denomination' doesn't matter as the meds are the same. What is important is to be on them so that the disease can be held back. I'm sorry that hasn't happened for you and you are reliant on steroid jabs which, as you know, only last for a limited time and bring their own, long term problems.

What does your rheumatologist suggest? If your inflammation levels have remained high on all the DMARDS / biologics it becomes difficult. If it's just a matter of pain or side effects – well, I've never equated 'meds working' with lack of pain and sometimes side effects will go given time but it is all a balancing act and, yes, that does get us all down from time to time.

Personally, I do very well on a combination of methotrexate and hydroxychloroquine but some people do seem quite 'meds resistant' and that must be very difficult.

Please join us on the other forums. We are very friendly and you'll be most welcome. It's just a little slow right now due to holidays and - dare I say it? - summer :?

bros

stickywicket wrote:

Hello Bobby. Welcome to the forum and please don't apologise for needing to let off steam a little. Arthritis is a very frustrating disease and we all need to from time to time.

The exact 'denomination' doesn't matter as the meds are the same. What is important is to be on them so that the disease can be held back. I'm sorry that hasn't happened for you and you are reliant on steroid jabs which, as you know, only last for a limited time and bring their own, long term problems.

What does your rheumatologist suggest? If your inflammation levels have remained high on all the DMARDS / biologics it becomes difficult. If it's just a matter of pain or side effects – well, I've never equated 'meds working' with lack of pain and sometimes side effects will go given time but it is all a balancing act and, yes, that does get us all down from time to time.

Personally, I do very well on a combination of methotrexate and hydroxychloroquine but some people do seem quite 'meds resistant' and that must be very difficult.

Please join us on the other forums. We are very friendly and you'll be most welcome. It's just a little slow right now due to holidays and - dare I say it? - summer :?

Hi SW,
Thanks for your input it is much appreciated.
Been on lots of DMARDS which did not work.
Currently trying biological. Started on humira which after about a year did seem to slow it. I judged this on the need for a steroid jab 9/12weeks. I did manage 20 weeks.
RA nurse examined me and said time to come off as it should be working better than this. I did argue that there was a difference in my condition (what do I know)
Anyway I have just started another bio which is called simponi, due my 3rd injection next week,,no difference as of yet.
9 weeks from my last steroid jab, shoulders, hands and knees really sore, cannot sleep at night so taking a lot of strong painkillers.
Really pleased to hear mtx is working for you, didn't agree with me, made me feel yuk.
All the best
Bobby

barbara12

Hello Bobby its lovely to have you on board, but sorry to hear things aren't good..like SW says we are all here to support one another so dont mind you moaning one bit..you will find lots of info on the forum, especially if you type in whatever in the search panel..or just jump in and ask away..

bros

barbara12 wrote:

Hello Bobby its lovely to have you on board, but sorry to hear things aren't good..like SW says we are all here to support one another so dont mind you moaning one bit..you will find lots of info on the forum, especially if you type in whatever in the search panel..or just jump in and ask away..

Thank you Barbara

dreamdaisy

Hello, it's lovely to meet you but I am sorry you have had to find us. I too have PsA (and that has led to OA is some useful places) and I understand what you mean about the apparent lack of 'effectiveness' by the meds. Mine is a boring story but, when I began my first med (sulphasalazine) I naively thought it would 'stop the rot' because I was used to meds changing the quality of my life for the better: fifteen years on I shake my head at my stupidity.

For the past eight years I have been taking a triple therapy, injected humira, injected meth and (still) the sulph, and I now understand that my PsA is well-controlled but I don't feel that in my joints, maybe thanks to the OA. I am reliant on walking aids whereas those who were diagnosed far quicker (and began the meds far sooner) are doing far better on less medication. Injected steroids have never done anything of note but the tablet version? Ooooooh, lovely! I took them for three years and then, after a good talking-to from a trusted rheumatology nurse, I took the decision to come off them, which took nearly another year. Taking a med that 'worked'? What was I thinking? Steroids have a role to play but their long-term effects are far from pleasant and this must be borne in mind.

Like all other long-term health conditions arthritis is both annoying and frustrating, however I think that what sets it apart from is that it is always painful in some degree or another, which the majority on here understand. This is the perfect place to vent because you are talking to the initiated, many of us have spent years living with it and its demands. My troubles began in 1997 when I was 37, I started sulph in 2002 and it's been physically downhill ever since but I am generally of a sunny disposition, this is my lot in life and I have to get on with it without boring others with my moans and groans. I am fortunate in that I don't have children (through choice) but I do have a very supportive and understanding spouse (today is our 19th wedding anniversary). I now have to go thanks to that but I hope to see your name on here again.

I wish you well. DD

bros

Many thanks for all the support guys.
Not sure how you guys sleep when your arthritis is active but for me its horrendous.
Last night I was lucky to get 2 hrs due to the pain in my shoulders wrists and hands. The shoulders are the worst, they are just starting to ease a bit now.
And that's me taking oxynorm pain killers,honestly I just do not know what to do next.
I will be contacting gp for a steroid injection. It takes about a week to go through the hospital clinic.
They are not very pleased when I do this as they like to access the joints.
I just wonder how these guys would cope with the pain we all suffer.

stickywicket

Shoulders are horrible things as it's so hard to get them comfortable in bed or out.

Have you made any adjustments to your bed, mattress, pillow? We have lots of threads on these as they are areas where most of us, sooner or later, decide changes must be made. I swear by my 2/3 double sprung / 1/3 memory foam mattress and my shaped memory foam pillow travels everywhere with me.

I also ensure I take some pain relief going to bed but I gave up on strong ones when I realised I was needing more and more and getting less and less help from them. I don't lie in bed not sleeping. If necessary I get up, make myself a cup of tea and read for a bit. If I'm still able to take more pain relief I will but sometimes just getting up and taking my mind off it for a while will work.

It's true that steroids mask the problem so, if we are on them semi-permanently, it's hard for the docs to know what's happening. hey judge by the blood results but steroids mess up these results. If you've had PsA / RA for 12 years and it's not been well controlled, some of your pain might be due to osteo. I have both RA and OA as there were no DMARDS when I first got RA. The DMARDS / biologics will control the autoimmune arthritis but will do nothing for any osteo. It is difficult as there's nothing that will reverse the process short of surgery.

I hope the simponi helps. As yet there seems to be no way of knowing which med will help who but gene therapy could alter that.

bros

Sound advice SW, thank you.
What does not help me is that I have other health issues. One that
I suffered for over 30yrs was UC which ended up with me having a panproctocollectomy (removal of the large bowel & rectum) resulting in a stoma bag.
Various blood tests have shown nothing in regards to active arthritis so it would appear I Am sero-negative and they are now saying Psoriatic arthritis. I do now have psoriasis on my skin.
Bottom line is my auto-immune system is shot to pieces.

My bed has a tempur mattress which to honest doesn't help that much as I try the spare bed often which has a bulk standard mattress.
I have tried various height and types of pillows. I find the softer pillows the most comfortable, tried expensive one's, makes no difference.
I think another reason I am so low at the minute is that I have had bad diahorrea for the last 4 days.

stickywicket

Of course you are low when you have had four days' worth of diarrhoea. That would bring anyone down, physically and mentally. And with a stoma bag to cope with into the bargain! My father-in-law had one and never felt comfortable with it. A friend of my husband also has one and copes brilliantly but things do, periodically, go a bit pear-shaped. He has no other health issues.

I can see now why you would opt for steroids – basically, anything to improve matters for a while.

I'm sorry, I have to go out now – lunch with friends. I hope you can get the diarrhoea under control as I'm sure that will help a little. However, even when we can be of no practical use here we are always around to sympathise and empathise.