It makes you wonder!!!!!

jimmy77

Hi,

So 3 weeks ago I see the rheumy for my decades old bout with RA and tell him my left foot and ankle have been painful for over a month. Some swelling, making me limp alot etc. No problem have a steroid injection and in 24 hours all gone and still gone as of this writing. 3 weeks to the day of the injection I wake up to my left hand swollen to the size of a grape fruit and looks like an infection. You can't even see my knuckles and fingers are virtually
immobile. So I decide I am not going back to see the rheumy again now already and hope it goes away. No such luck. Began taking prednisone I have on hand orally and in 48 hours now going back down. Still considering Humira, but the long and the short of this is
the disease makes it near impossible to have any short or long term plans because you never know when it will strike.

jimmy77

woodbon

Hi
You sound as if your really fed up and I can't say I blame you. Perhaps you should get some advice about the hand, as it sounds nasty? I know its horrible keep going backwards and forwards to the docs but, in the end it may be your best bet.

It is difficult making plans. I hate having to cancel things at the last minute and letting people down. I hate missing things too!

Hope you feel better soon. Love Sue

jimmy77

woodbon wrote:

Hi
You sound as if your really fed up and I can't say I blame you. Perhaps you should get some advice about the hand, as it sounds nasty? I know its horrible keep going backwards and forwards to the docs but, in the end it may be your best bet.

It is difficult making plans. I hate having to cancel things at the last minute and letting people down. I hate missing things too!

Hope you feel better soon. Love Sue

Hi Sue,

Thats what people/gp's etc have said over the years. When they see the selling it looks like a break/strain/gout/infection and quite frankly the pain is the same since I have had all of the previous in some form. Now a good rheumy sees the problem and knows some of the history and immediately figures out it's RA, not needing blood tests etc. to diagnose. Well anyway the hand is almost back to normal after 2-3 days on prednisone 15 mgs therefore there is no reason to tough out any pain cause it's not goin away without steroids. So, yes I have been fed up for awhile, but really more frustrated with the lack of a strategic medical plan/safe meds. to deal with this disease and lead a "normal" life. Thanks for your comment.

jimmy77

redpoppy

hi jimmy,this disease is so unpredictable so we never know whats going to happen from one day to the other.sometimes one hour to another.im sure my arthritis moves out one of my joints and goes straight into another.i used to think i was imageining it but now im not so sure.its like on a course of destruction.its also hard to get the right medication as sometimes if it dont work straight away we feel like giving up.anyway hope you feel better soon.

jimmy77

redpoppy wrote:

hi jimmy,this disease is so unpredictable so we never know whats going to happen from one day to the other.sometimes one hour to another.im sure my arthritis moves out one of my joints and goes straight into another.i used to think i was imageining it but now im not so sure.its like on a course of destruction.its also hard to get the right medication as sometimes if it dont work straight away we feel like giving up.anyway hope you feel better soon.

Hi,

Well, I have never given up for decades so, thats not going to happen and I've seen alot of bogus information along the way. I hope your feeling better.

jimmy77

jimmy77

jimmy77 wrote:

redpoppy wrote:

hi jimmy,this disease is so unpredictable so we never know whats going to happen from one day to the other.sometimes one hour to another.im sure my arthritis moves out one of my joints and goes straight into another.i used to think i was imageining it but now im not so sure.its like on a course of destruction.its also hard to get the right medication as sometimes if it dont work straight away we feel like giving up.anyway hope you feel better soon.

Hi,

Well, I have never given up for decades so, thats not going to happen and I've seen alot of bogus information along the way. I hope your feeling better.

jimmy77

Hi,

I am not sure if this is of interest, but the saga goes on. Here it is the following week and the left hand, left ankle are absolutley fine and the back of the right knee is stiff/swollen and I cannot bend the knee.
Happen to have an appt. with my gp for bone density results
and I explain these occurences to her. She is bewildered and works closely with my rheumy who now says the only thing left to do is try Humira and MAYBE it will help. Keep in mind this saga of mine started back in the early 90"s. My spirits are very upbeat but these medical professionals are only scratching the surface on this disease and I will coninue to question everything.

jimmy77

woodbon

Hi jimmy,

It's sadly true that scientist have only 'scratched the surface'. But sometimes that scratch leads on and on until the scratches form a pattern and the pattern gives an answer. Also scientist are, in this country, help back by 1. lack of research money. 2. EU and government regulations, some very nessecessry some rubish.
3. Poor salaries, which mean the most talanted people either go abroad or do something else, not because they have to, but because they need to work. My husband is a very highly qualified research biochemist, with years of university (Oxford degrees) and research experience in top industries, who has presented papers all over the world.

When the 1990s crash came Z....... made him redundent. We had the choice of going to Belguim, Australia or Califonia, but neither of us wanted to. Now hes a school technician, a job most people could do and a low salary.

I'm telling you this story to point out that the fault often lies, not with the Medics and scientists but the government we elect and the EU. Some of the best medications are not possible to prescribe, because they cost a lot, not to make huge sums for the drug companies pockets, but to pay for the costly research. A drug takes 10 YEARS often from discovery to prescriptions.

God sorry about this god awful rant, its a subject that is very close to my heart! I could go on and on. I used to work with scientists in for 7 years, typing papers. Last week the paper carried an article about a new 'cause' for a disease. I typed up the orighinal research over 15 years ago. Gosh! :oops: :oops: I must stop going on :!: :!: :!: Sorry its no help to you. Just a rant :!: :? Forgive me. :oops: :?:

jimmy77

woodbon wrote:

Hi jimmy,

It's sadly true that scientist have only 'scratched the surface'. But sometimes that scratch leads on and on until the scratches form a pattern and the pattern gives an answer. Also scientist are, in this country, help back by 1. lack of research money. 2. EU and government regulations, some very nessecessry some rubish.
3. Poor salaries, which mean the most talanted people either go abroad or do something else, not because they have to, but because they need to work. My husband is a very highly qualified research biochemist, with years of university (Oxford degrees) and research experience in top industries, who has presented papers all over the world.

When the 1990s crash came Z....... made him redundent. We had the choice of going to Belguim, Australia or Califonia, but neither of us wanted to. Now hes a school technician, a job most people could do and a low salary.

I'm telling you this story to point out that the fault often lies, not with the Medics and scientists but the government we elect and the EU. Some of the best medications are not possible to prescribe, because they cost a lot, not to make huge sums for the drug companies pockets, but to pay for the costly research. A drug takes 10 YEARS often from discovery to prescriptions.

God sorry about this god awful rant, its a subject that is very close to my heart! I could go on and on. I used to work with scientists in for 7 years, typing papers. Last week the paper carried an article about a new 'cause' for a disease. I typed up the orighinal research over 15 years ago. Gosh! :oops: :oops: I must stop going on :!: :!: :!: Sorry its no help to you. Just a rant :!: :? Forgive me. :oops: :?:

Hi,

Thanks for your comments. It really broadens my perspective of how such inadquate treatment of this disease has and is continuing on. After, basically trial and error treatment for RA over decades for me, it just irks me to see it still going on today. When you see newly diagnosed patients come on and are virtually overwhelmed with the disease and provided the same treatments of 10-20-30 years ago ,that you know don't work, it is a shame.

jimmy77

mrsdalloway

Hi I am so glad someone else has brought up this subject as I sit and watch the news and wonder when our announcement is going to be that they are closing in on a cure. I know it sounds really awful but there is such a lot of money and effort goes into other diseases it just feels as though we are never given a second thought. Don't for one minute think I begrudge the other people their cures/help but I can't help thinking as one by one my joints are going at the grand old age of 38 when is it going to be our time to cheer and I was going to say clap but that would hurt too much!! Also, when money is being raised through one event or another Arthritis is never mentioned is it because this is a cinderella charity? Sorry rant over.