Stelara round two

[Kat]

Fred, glad to hear you are at least a bit better. I hope the Stelara kicks in and gets you back to feeling lots better. As for the anti inflammatories.... I know you aren't keen on them, but hope you take them instead of suffering if it comes down to it.

We all are restricted to our options available through our health care / insurance / money. It's interesting how different countries are so varied when it comes to medications.

[Fred]

Fred, glad to hear you are at least a bit better.  I hope the Stelara kicks in and gets you back to feeling lots better.  As for the anti inflammatories.... I know you aren't keen on them, but hope you take them instead of suffering if it comes down to it.

We all are restricted to our options available through our health care / insurance / money.  It's interesting how different countries are so varied when it comes to medications.

Thank you Kat, watch out I'm getting my positive attitude back as that's still the best treatment overall.  

Yes it is interesting on how different countries work, and I think we could all find fault with others and our own. But I'm very happy with the French health care and can't thank them enough, they even gave my Dad another 4 years of life when we bought him over here to live with us after the UK told him he had around 6 months left.

If the health care was rubbish I would go back to the UK, but it's better than the UK in my opinion. OK they have Fumaderm and we don't but one drug doesn't make the difference for all, we also have to remember that all treatments can fail at any time and at least there is more on the horizon for people with psoriasis.

Yes I may wait an extra 3 years before it's available, but the positive from that is I can see how it's working for others before trying.

I'm happy to stay on Stelara as it's been very good to me, all I need to do is get over this bought of psoriatic arthritis and things will be good.

And I will get over it now, as I know what my options are.

Oh and the French Sunshine, Cheese and Wine is better than in the UK so that must compensate for the lack of one little pill that may not even work for me.    

[Kat]

Oh and the French Sunshine, Cheese and Wine is better than in the UK so that must compensate for the lack of one little pill that may not even work for me.    

Sounds like France has the best medicine there is then!

[Caroline]

Oh and the French Sunshine, Cheese and Wine is better than in the UK so that must compensate for the lack of one little pill that may not even work for me.    

Sounds like France has the best medicine there is then!  

France IS the best medicine.
It is one of the most relaxed countries of Europe.

[Fred]

Oh and the French Sunshine, Cheese and Wine is better than in the UK so that must compensate for the lack of one little pill that may not even work for me.    

Sounds like France has the best medicine there is then!  

France IS the best medicine.  
It is one of the most relaxed countries of Europe.

Don't tell everyone.  

[Caroline]

OK I'm back from my appointment with my dermatologist, and she was as disappointed as me to see the state of the psoriatic arthritis.

My bloods have shown there has been an inflammation flare up, what caused it we don't know but it is slowly going back down again and I did manage to drive today which was nice as I'm not a good passenger. Mrs Fred was pleased too and she said she noticed I was moving a little better toady.

Well that is at least a little bit of something, so you have a kind of proof that there was an inflammation, but also the good point that apparantly it is going down again.

So back to the appointment, she gave me 5 options.

#1 Yep you guessed it Methotrexate. I refused.

Couldn't agree with you more , it is a medication which I also will never use anymore.

#2 Small Methotrexate injection. I refused.
#3 Go to Rheumatology and see what they say. I've booked an appointment for April to coincide with my next dermatology appointment, as I already know the answer from the last time I went to see them "You have psoriatic arthritis and we prescribe Methotrexate" so that will be a waist of time.
#4 Stay on Stelara and ride out the inflammation with some anti inflammatory pills as and when I feel I need them. I've taken the prescription for the pills just in case I do feel like giving in and taking them.

Seems an option.

#5 Give Stelara another try on a double shot again over 3 months instead of 45mg on two months. I wasn't keen as last time I tried 90mg it made me feel like a zombie, but this is what I'm going to do.

Ok so you have made a clear decision for yourself. Also seen what is below, I understand this step. I think I would do the same.

I asked about Simponi (only available via Rheumatology) she phoned them and had a chat, but they said NO as I have had a reaction to both Remicade and Humira in the past and they felt the risk was to much as it's a similar product.

I asked about Fumaderm and it's not available in France, and as far as I could work out the trials have been stopped.

That is a pity.

I asked about Psorinovo and that is not registered for use in France.

It is nowhere registered, so I am not surprised on that.

So I'm stuck really, and unless I take Methotrexate with Stelara just to help the psoriatic arthritis there isn't much else they can do for me.  

I'm a stubborn old sod and will not take Methotrexate, I may not even take the anti inflamotories (but will hold onto them for amunition) but another thing I can be is determined and that is what I,m going to do.

  That is at least the good spirit !!  
Surely good to be stubborn on MTX

I will be concentrating on getting myself back into positive mode, I will take my 90mg of Stelara at the weekend, possibly take an anti inflammatory if needed and just get on with it.

 

I really understand that you want to stay in the French medical system and don't want to step out of that in e.g. a try on Fumaderm or Psorinovo.

Over here in NL things are more flexible. I said goodbye to my rheumatologist, but he said that I always could come back.
And over here in NL, DMF because of its Z-index number, is on the list of covered by the insurance. So it doesn't matter which type of DMF medication you choose, there are more versions of it available.

Anyway I am still a bit worried over your wellbeing, but I also see that you are going for it.


Caroline

[Fred]

Anyway I am still a bit worried over your wellbeing, but I also see that you are going for it.


Caroline

Thank you Caroline I shall put the in a special place and keep it for ever.  

Yes it's a struggle but I'm working hard on the positive attitude, my wellbeing will be fine especially with people like you and the others around to keep me busy.      

[D Foster]

Anyway I am still a bit worried over your wellbeing, but I also see that you are going for it.


Caroline

Thank you Caroline I shall put the in a special place and keep it for ever.  

Yes it's a struggle but I'm working hard on the positive attitude, my wellbeing will be fine especially with people like you and the others around to keep me busy.      

No Fred I would also say no to MTX, 9 years on it with the last at 20mg by self injection was enough for me .I to am having problems with the psoriatic arthritis at the moment though not as bad as you but I can sympathise . I am just taking painkillers and hobbling around ,roll on the warmer weather. The NHS in UK leaves a lot to be desired , I am very lucky at the moment as the derm side where I live is done as a private contract at a BUPA hospital by a private consultant and the difference is fantastic.

[Fred]

No Fred I would also say no to MTX, 9 years on it with the last at 20mg by self injection was enough for me .I to am having problems with the psoriatic arthritis at the moment though not as bad as you but I can sympathise . I am just taking painkillers and hobbling around ,roll on the warmer weather. The NHS in UK leaves a lot to be desired , I am very lucky at the moment as the derm side where I live is done as a private contract at a BUPA hospital by a private consultant and the difference is fantastic.

Thank you Dave, I've only ever had the methotrexate pills and they tried to tell me there are no problems with the injection. But I was having none of it, how did the injections affect you ?

It's also reassuring you are having a bit of a problem too, are you on 90mg Stelara?

EDIT: Just noticed you have 90mg in your profile, that's a good idea.  

[D Foster]

No Fred I would also say no to MTX, 9 years on it with the last at 20mg by self injection was enough for me .I to am having problems with the psoriatic arthritis at the moment though not as bad as you but I can sympathise . I am just taking painkillers and hobbling around ,roll on the warmer weather. The NHS in UK leaves a lot to be desired , I am very lucky at the moment as the derm side where I live is done as a private contract at a BUPA hospital by a private consultant and the difference is fantastic.

Thank you Dave, I've only ever had the methotrexate pills and they tried to tell me there are no problems with the injection. But I was having none of it, how did the injections affect you ?

It's also reassuring you are having a bit of a problem too, are you on 90mg Stelara?

EDIT: Just noticed you have 90mg in your profile, that's a good idea.  

Yes Fred I am on 90mg Stelara and apart from a bit of fatigue I have really had no problems.
When I was on MTX I took the pills for 6 years at a weekly 25mg dose but I had lots of side effects such stomach cramps , headaches, sickness,galloping whatsits in fact I was in the loo that often I could make 100 words out of Armitage Shanks. When I went on to 20mg self injections most of the side effects went away apart from the headaches however over the next three years most of them came slowly back and I did not get any better than 80% clearage though it was OK for the PsA.
Where I live is great in the summer but in the winter the humidity is usually quite high and with the cold it is not a good combination ,we had sea fog this morning and it's only 1 degree C with a wind . I don't know if you do it in France but I do my own injection of the Stelara ,I am very lucky as in my area the derm dept is done at a private BUPA hospital by consultants who are also private, it's so different to the NHS.