Diagnosed with TA - any advice

Hi Crystal Seer,
I don't know anything about this condition but just wanted to say I'm sorry to hear you've had a rough time, and will send you some Reiki.

Hugs,

Star_dust

Temporal arteritis. I'm living with a sufferer who has been on prednisolone for nearly a year, and with the ever decreasing dosages, will be on it for a further 9 months. He occasionally gets break-through pain, so ups the dosage by half a milligram for a couple of weeks, and then starts the de-crease again. He is under the watchful care of a rheumatologist at a local hospital. Various scans missed it, as did a biopsy of his temporal artery. The doctor at the time said that the problem may well have been millimetres either above or below the biopsy sample area.
If you have any questions, do ask, but you should now be under the care of a pracititioner.

Many many thanks for your replies... Unfortunately I did NOT get any notifications of this or I would have replied much sooner. lol lol..

I am under the Neurologist, which I will see next week, - but as soon as it was discovered.. i was rushed off to the eye clinic, a biopsy was discussed and a letter sent, but surprise surprise, by the time the letter got to the Vascular he said he felt it too late to do it.. as already on steriods.. lol lol.. if, I got worse or symptoms returned or escalated, they would do a emergency one.. woop de do.. :D(mind you have the sides of my temples cut open - sorry to squimish people, is not my thing.. hahah)

Am on calcium tablets as my bone structure is very poor, esp knees( 2 ops each on them) so am expecting some setbacks with them.

Jabba, Sorry to ask, how long before he returned to work and was he treated any different??.. I am hopefully returning next week Back to work prog, ..but they are very hestitate to put me back on full time shifts (:confused::confused::confused::confused:) talk of cut backs...

Trying to live on half pay, will be hand to mouth job I don't want to repeat from years ago when my kids were little.. 🙁

also I was told this illness could be regarded as a disability criteria???,Anyone have any views on this...

GP says I could be on tablets for quite a few years.... Oh the joy of watching my food and having a "moon face"...

Sorry my head is buzzing with different questions...:D:D

Hugs and more hugs Molls.... (hi also to a fellow sufferer.. lol lol..)

Jabba, Sorry to ask, how long before he returned to work and was he treated any different??..

MY OH had the biopsy (just a tiny cut in the skin surface (they don't touch the bone!) about 2cm long, following the line of his spectacles) on a Wednesday, and was back at work on the Thursday morning. Treated differently? No. Just asked if he had broken any bones after I'd hit him! (Bruise evident on the temple). He has not been told that he could be disabled, and I'm not sure how the DSS could assess this condition for benefits.

However, the biopsy results came back as negative, and during the consult with the Rheumatologist, he said that much of the time, temporal biopsies can be 'negative' as the 'giant cells' they are looking for can be somewhere in the temporal artery, but not necessarily in the cells that they remove! Unlike your previous posts about TN, it was never diagnosed as that - my father has TN and it is a different pain 🙁 Once the correct dosage of steroids had been set, my OH was painfree. He occasionally gets 'breakthrough' pains, so ups his meds by a milligramme, until it settles, then gets back into the 'reduction' phase. He will be in this phase for quite a while to come, and, if necessary, may always be on steroids. He did not develop a 'moon face' - I think this only applies to people who are on high doses, such as transplant patients. He follows a GI diet, so hasn't experienced any weight gain. Before they got the dosage right, he did get a bit 'moody' - grumpy with everyone - but we just assured him, that he was like that before 😉

Hi hunnie,
Thanks for your reply - I am decreasing down at present , am on 35mg per day from 60mg.. and as I have had them before for asthma.. I always seems to get a "fat face" hahahahah.. having lost weight I am enjoying getting into a lovely size 14 again.. :D:D:D..
Regarding work.... It is just, that my employer is keeping me on short hours (20 instead of 40) - "just in case my problems flair up again and so I can attend any o/patient apps" I am feeling a little let down and wonder if this is the normal health and safety assessment, as they have said..?? Yes it has taken 3.5 months to obtain what the problem was and I was off sick for that time... am I being paranoid???.:confused::confused::confused:

Hugs to you xxxxxxxxxxx
Molls..

How long has it taken you to get to 35mg? My hubby reduces by .5mg every 3rd week - are you trying to do it too quickly? We have a chart on the wardrobe door that tells him weeks and days of when to decrease, and to how much. I think you ought to have a long chat with your consultant to make sure you are not moving too fast. As for work? I'm not sure what to say. What do you do? Are they trying to ease you out, and using your recent absence as a method of doing it? Might be worth a chat with a union rep (if your business has one). My OH only had a couple of weeks off at the onset of the pain, but as soon as the steroids kicked in, he was OK and now back full time. I spose he is lucky really, as he is a team manager, so can take time off for appointments whenever they crop up. He can also work from home - but ends up doing more hours so tries not to do this if possible!

Hi Jabba,
I was told to reduce by 10mg every 2 weeks unless symptons come back.
They,(headaches), did when i dropped down to 30mg and then I was told to increase back to 40mg for 4 days, and back to 35mg for 2 weeks and keep decreasing... lol.. I seem to get pulsating in both temples every so often - I see my doc tomorrow for a update and more medication.
As for work... I have no idea what they are playing at.. I feel really good and back to normal - so why work is treating me with kid gloves I have no idea.

hugs.. molls.

Sounds like the reduction is too fast. Talk to your GP about slowing down, and reducing by smaller amounts. Our GP was keen to get my OH off too soon, and the consultant stepped in to adjust the reduction time to make it longer - basically, like you, he was still getting the pain.

Hi Jabba,
Well I will let you know how I get on tomorrow when I have my chat with the gp.. I must admit I cannot fault him - as he has been soooo good looking after me and always at the end of the phone If I need to speak to him.:D.. Just hope he is happy to sign me off and let me go back to work.. -

hugs hunnie for your time and answers - you'r a star *
:hippy::nature-smiley-008::1kis::1kis::hippy:..... Molls..

Just to say Im so sorry to hear you have this horrible condition and would like to send you Reiki healing if you wish.
I suffer with screaming face nerve pain which is bad enough and cannot imagine your pain.
I find the forums on Artritus Care so supportive they also have a helpline, the members are so special and helpful.
Love Orchid x

Thank you Orchid:),
I would love tgo have a reiki session.. but No car so anything like that has to be local to my area.. lol..
we had a lovely little crystal - alternative health shop but they moved to stevenage leaving a big hole and gap in bedford - so sad.. as there is a great demand for the like in the area.

Well back to work on Monday, But If my GP had really had his way.. he would have kept me on the sick for the 6 months... lol lol.. he obviously find me a medical mystery lol lol.. Only think is.. he is determined to get me scaled down on the steriods to a lower dose asap..
makes me nervous as I wait for the symptoms to come back and hit my head again.. lol...

you have all been so kind with your replies.. so big mwah mwah mwah :grouphug::grouphug::grouphug: