I have had Hughes for for 50 years, now I have Temporal Artritus, could this have been caused by Hughes?

[norris]

[paddyandlin]

Hi Norris,

Please find the attached reaserch by Artthritis Research UK it explans about the Temporal Artritus and it came up with some intresting info see what you think.

arthritisresearchuk.org/~/m...

Paddy

[jessielou]

Hi Norris

My gp suspects I may have temporal artritus, had a bad spell early last year, I found steroids extremely effective treatment, have to have them fairly often for chest infections and asthma so seems to have settled. I wonder how many others with hughes have this,

Take care gentle hugs love Sheena xxxxxxxxxx

[norris]

Thanks Sheena

What doseage where you on, I am on 60mgs daily and they have caused all sorts of problems including unstable diabetes, when they lowered them the Temporal Artritis came back and now I am loosing vision. My Dr's seem to disregard the Hughes, only 75mgs of Asprin. Until they treat the Hughes more aggressivley I feel the Artritis won't clear, and I have been the steriods 3months, and I can't see me lowering the dose.

[jessielou]

Hi Norris

i was on 60mg then 40 mg. You right 75 mg aspirin is not enough.

If you can get to London St Thomas's or London bridge is the place to go.

Push for referral.

I hope your feeling well today

take care gentle hugs love sheena xxxxxx

[Hilariew930]

Sheena,

Just curious why aspirin is not enough? That is all my dr. has prescribed..... That makes me question them a lot. My only symptoms have been bad migraines, dizziness, lack of coordination and bad fatigue (migraines gone since aspirin treatment began).... But do you think I should push for more? He said they typically don't do more unless someone has a more significant manifestation..... So many questions...sorry. ; )

[norris]

Hi Jessilou,

They have now reduced my steriods to 50ms but added Azathioprine 50ms to be increased to 200mgs over next mgs, let hope this stops the Temporal artritis, My consultant does not ant to put me on warfain because of the lifelong implications for this. The diabetes is also very hard to control. Tomorrow I see the eye consultant to see how much damage has been done, of course the diabetis is going to effect my eyes as well, I did see a report on fruitflow, and I have added a glass a day but it would be better if I took it by tablet form.

[norris]

To Sheena,

I did think my blockages would not be removed if I was not on warfarin, But its such a big decision to go on warfarin that my Dr's say not at this time and I don;t want to either. I am such a lot of medication. About the eye, if my eye has not improved they are going to so a steriod implant in May, with careful review until then. The blockage is caused by APS and not the Temporal Artritus.