Fumaderm and hormone injections

[jiml]

Jim that's my problem I have fibro and psa and I turn from one side to another on my back and on my stomach till one thing or another hurts then my hips hurt,knees fingers hell everything hurts!PSA sucks!

Thanks Glenda that's why I want to try to catch it early before it causes painful joint damage

I'm sorry you get it so bad Glenda were you diagnosed early?

[glenda grant]

Jim that's my problem I have fibro and psa and I turn from one side to another on my back and on my stomach till one thing or another hurts then my hips hurt,knees fingers hell everything hurts!PSA sucks!

Thanks Glenda that's why I want to try to catch it early before it causes painful joint damage

I'm sorry you get it so bad Glenda were you diagnosed early?

I was diagnosed 10 years ago had the psoriasis probably from a teenager on.Thought it was dandruff all my life here it must have been psoriasis.

[jiml]

Jim that's my problem I have fibro and psa and I turn from one side to another on my back and on my stomach till one thing or another hurts then my hips hurt,knees fingers hell everything hurts!PSA sucks!

Thanks Glenda that's why I want to try to catch it early before it causes painful joint damage

I'm sorry you get it so bad Glenda were you diagnosed early?

I was diagnosed 10 years ago had the psoriasis probably from a teenager on.Thought it was dandruff all my life  here it must have been psoriasis.

It's not a nice disease that we have been blessed with

[Caroline]

I will start doing more exercise ..... Maybe go spinning   , or maybe something less energetic

Try switching hands from left to right when drinking it's a good start.

Watching spinning is better than taking part.  

I can always rely on you for good advice

I'll start with my coffee mug... Then my Merlot glass .

Watching spinning will be good exercise for my eyes  

Anyway, keep the joints moving, that is important. I do the same and it works very well. Although this evening at spinning my right foot did hurt.

The doc is apparently a bit uncertain to make an early decision, cause it is quite obvious that if it would be PsA, which I hope for you it isn't, then it is really logical to up the dose. Anybody can make that conclusion.

[jiml]

I will start doing more exercise ..... Maybe go spinning   , or maybe something less energetic

Try switching hands from left to right when drinking it's a good start.

Watching spinning is better than taking part.  

I can always rely on you for good advice

I'll start with my coffee mug... Then my Merlot glass .

Watching spinning will be good exercise for my eyes  

Anyway, keep the joints moving, that is important. I do the same and it works very well. Although this evening at spinning my right foot did hurt.

The doc is apparently a bit uncertain to make an early decision, cause it is quite obvious that if it would be PsA, which I hope for you it isn't, then it is really logical to up the dose. Anybody can make that conclusion.

Thanks Caroline yes it's early yet, time will tell, I will keep my joints active
Sorry you were getting some pain at the spinning tonight hopefully your pain will pass soon, the cold damp weather isn't helping I'm sure

[jiml]

Been to see the Rheumatologist today inconclusive until results come back and I have an ultrasound scan


My early January blood results my kidney and liver functions are all within normal limits and my lymphocyte count has improved again to 1.45. ( normal between 1-3)

At the moment I am still following a regime with my Fumaderm where  I am now taking my  2 Fumaderm tablets morning and 2 tablets in the evening with meals Monday to Friday. Then giving my blood a rest Saturday and Sunday and resuming again on Monday 2 tablets morning and 2 evening.
I have been doing it for 5 weeks and I haven't noticed my psoriasis or my aches getting any worse

Met the rheumatologist today a Doctor Hamilton, she gave me a good examination and looked at my shoulders feet and hands and said she would reserve judgement until I had some extra tests so had X-rays today and booked an ultra sound, for later ...will have to wait for an appointment for that
She was happy with me staying on Fumaderm as my bloods were good and I'm tolerating it well.

I asked if it did turn out to be PsA could I try upping the dose of Fumaderm. it was decided not to make any decisions until the results were in, and made another appointment for July but said as there was room to increase the Fumaderm dose, it could be the first option

She did say it could be wear and tear and suggested as I wasn't in pain to get plenty of exercise and keep the joints moving

A couple of weeks ago I got a letter from the dermatologist who said that I had some wear and evidence of arthritis in my feet and fingers , and suggested I try methotrexate ....I have written to inform her that at our meeting I did say there was no way I would take the methotrexate ......I have been there and couldn't tolerate it and wasn't prepared to put poison in my body again


just got back from a meeting with the dermatologists " assistant " today  and he was reading through the letter the rheumatologist sent me .....he asked if we should do what the rheumatologist had suggested .....
What ...... I asked if anyone was listening to me ...and NO I am not going back onto methotrexate...he said where does that leave us, I said  why don't we try my suggestion and up my dose of Fumaderm and see if it works..( he scurries out to have a word with the boss the proper dermatologist) when he returns he waffles on about there not being evidence of it working on psoriatic arthritis ...... I said well there won't be if you pull the plug when it's suggested.....
I told him of the forum and people here on DMF treatments for PsA. But he was not prepared to raise my dose for fear of side effects...... I pointed out to him that I am having monthly blood tests and my levels are good and if I develop low blood count or increased creatinine we could reduce the dose as with Fumaderm all these effects are reversible........he wasn't listening ....his boss had told him one thing and he wasn't for shifting

I asked him where do we go from here? He said continue on my present dose till I see the rheumatologist in July or take methotrexate .....I said I would rather stick needles in my eyes... We agreed we weren't getting anywhere
So now I will wait for round 2 with the dermatologist in July
To be honest I came away after the appointment being 50 minutes late ...to then be put with someone who had no idea and had to keep slipping out to ask the consultant what to do left me more than annoyed.
And no further forward than I was when I wasted the best part of an afternoon  

[Fred]

#1 They are not going to be interested in Psoriasis Club Jim. We are just people living with the condition and our opinion is worthless to someone in a white coat that has never had to live with it. What do we know ?  

#2 In their defence if the protocol is telling them that the risk is to high and there not enough evidence. Then they have to follow that protocol. We may not like it or even agree, but their hands are tied and should something go wrong then it could be the end of their career.

#3 If I were you I would just hang on in there till July

[jiml]

#1 They are not going to be interested in Psoriasis Club Jim. We are just people living with the condition and our opinion is worthless to someone in a white coat that has never had to live with it. What do we know ?  

#2 In their defence if the protocol is telling them that the risk is to high and there not enough evidence. Then they have to follow that protocol. We may not like it or even agree, but their hands are tied and should something go wrong then it could be the end of their career.

#3 If I were you I would just hang on in there till July

Thanks Fred I will ....I know they have a protocol but I'm not asking to go higher than the maximum dose but I will do as they want and wait till July

As you say what do we know we only speak to people who have nothing to gain by lying about their treatment and how it works ........

Anyway I will see you at the bar I need a drink

[Bill]

Jim,

You are much better off with a specialist than without. I might have the freedom to play about with dosages, and I can get blood tests, but if the treatment stops working I have the choice of going on mtx or nix. Fortunately things continue to go very well for me. I have got better results by concentrating doses. My overall drug intake has decreased, and taking doses once every three days seems to give the best control of my arthritis.

[jiml]

Jim,

You are much better off with a specialist than without. I might have the freedom to play about with dosages, and I can get blood tests, but if the treatment stops working I have the choice of going on mtx or nix. Fortunately things continue to go very well for me. I have got better results by concentrating doses. My overall drug intake has decreased, and taking doses once every three days seems to give the best control of my arthritis.

Thanks Bill I agree, however I will go down fighting for Fumaderm until they can convince me it's dangerous

I'm glad your regime is working well for you but I will follow instructions until July and start my fight again