Been a while........................

[Sue8]

Hi all, long time no..............post ?

Hope you are all well-ish and looking forward to the holiday season.

Sorry it has been so long since I last posted. I have had a rather bad year to be honest. I am still on 15mg pred daily but as I was diagnosed with RA in Oct 2012 and up to now no meds are working. Along with the pred I am on methotrexate via injection once a week. I have also tried one called hydroxychloroquine along side it but with no luck as I had an allergic reaction to it. So now I have had 2 DAS assessments for the next stage which is a biologic or otherwise known as an anti-tnf. This is called Humira and is a fortnightly injection from a pen. I doubt I will get set up with this til the new year. Hopefully if this works I can then reduce the pred. My CRP is still 40+ and I have now been told I have severe RA. I have had a mobility assessment which gave me a blue badge and now have a parking bay at my home. I now also receive high rate mobility on the DLA and low rate care. My family are so supportive, well most of them are. Hubby is fab and wakes me every morning to see if I need help to get up before he goes to work. He has put me an extra hand rail up the stairs so I have one either side and recently done me a fabulous new large mobility shower with seat and grab bar. My left hand is quite bad that I often have not got enough hold in it to hold my fork so he also cuts up my food for me though I have a knork but it's not brill on meat. He also got me another mobility scooter, one that goes on the road for when I am out alone so can go faster

I don't know if you remember but I home educated my 2 youngest children. Well now the oldest of the two has gone back to school some 30 miles away in Melton Mowbray. It's a special school for his needs and it is fab. He is a different child and after 5yrs of home ed he is studying for a couple of GCSE's I am so proud of him. So that just leaves my now 8yr old daughter at home with me being home educated and she helps me no end she is great. I have finally taught her to use my digital sewing machine which she now uses with ease and yesterday she asked if I could teach her to embroider. This willbe a challenge because of my hands but will do my best.

Any way I am babbling on so will let you all go and rest up. Hope you all have a very happy Christmas and an even better new year

Regards

Sue

[PMRpro Ambassador]

Unfortunately about 1 in 6 patients who initially are diagnosed as PMR go on to be diagnosed as having RA (or something else) at a later stage. It isn't known whether the PMR is able to morph into PMR or whether it is simply RA playing wolf in sheep's clothing.

I do hope you are suitable for biologics and that they work because when they do it is wonderful! You might be interested in a blog written by a Danish woman who lives in Toronto who has had severe RA since teenage and who feels she was given her life back when she was able to use a biologic. It's called "The Seated View" and I really enjoyed reading it - and it is a clear reminder to those of use who whinge about PMR that it is a fairly minor chronic illness most of the time.

A very happy Christmas to you too - and a very much better 2014 in the company of a biologic!

[Sue8 in reply to PMRpro]

Thank you

[venezia1]

Hi there - just wanted to say happy Xmas, and hope Humira works for you. Unfortunately it didn't for me, well, not after a few months. I too am on Pred and metho injections, with RA and GCA, and can't lower my pred below 15mg or I start to get the GCA symptoms again. Very frustrating.

I know biologics work wonderfully for some people - a man in my local group looks twenty years younger than his 60+ age in his movement alone.

All the best.

[Sue8 in reply to venezia1]

does the MTX work for you with the pred. It isn't for me but they want me to stay on it together with the Humira.

[trish29]

Thinking of you sue8 ..A Merry Christmas to you and your Family..I have enough problems with my PMR /Osteo- arthritis..not being able to walk but people like you are very Brave and strong willed..I hope that 2014 is a better year for you and your family. The Methotrexate didn't work for me and I took Hydroxychloroquine but that made me very nauseas ..I am now on Amitriptyline which has helped me to feel that bit better in myself ,it made me drugged up in the beginning . Good luck with the new treatment Sue and I will be looking out on the Forum in the new year to see if you have put on a new post .I am waiting on my appointment next weds 18th Dec with my Rheumatologist to get my MRI Scan Results.especially apprehensive about the results to my spine,but must be positive. . trish29

[Sue8 in reply to trish29]

Thank you Trish. Good luck for tomorrow. Please let us know how you get on. A merry Christmas to you and yours. xx Keep smiling

[trish29 in reply to Sue8]

Good Morning Sue8. Thank you for your Good Luck wishes for my Rheumy Appointment tomorrow. I am apprehensive about the MRI Scan results but I have a really understanding Rheumy and he is so caring , so I will do what ever he advises. Im already doing more since I've been on Amitriptyline but like you wish I wasn't in so much pain and could get about a bit better. I'm so pleased you are enjoying your new scooter ,I use mine quite a lot and it gives us great independence. I have got a small slow one as well for shopping as that fits in the car better but I get cross with it because it is so slow . You sound as if you have a kind caring husband and being able to teach your family at home is amazing.. A Merry Christmas to you all and I hope your medication arrives soon and that you have a Pain free Christmas .I will let you know my MRI Results love trish 29x

[Sue8 in reply to trish29]

Hey, so know what you are saying about the "slow" scooter lol. My first one is just a small path one supposedly 4mph yer right. When I am out on the big one alone I have it on the 8mph but turned down slightly when I am out alone. Also when on way back from town with my 8yr old she has a ride and I turn it up coming down our street being careful that no one is nearby or I have to turn it down. I am sick to death of chasing my meds all the time. I have told my supplier that I only have one left for Friday and still they have not sorted it so will go about 3 weeks without it. It's not working but I bet I will know the difference if I don't have it. But we keep smiling

[Whittlesey in reply to trish29]

Hi Trish29, I'm interested in what you have said about the PMR and osteoarthritis and trouble walking. I also have very bad osteoarthritis in my left hip, tremendous trouble walking. I have been diagnosed w/GCA. They don't seem to be sure about PMR. I have a dissecting cartoid artery, which gives me much neck pain. They seem to think the pain comes from the artery, not PMR.

I can barely walk. could this be related to the GCA? My rheumatologist has suggested this. It is the first time -- there has been a connection between the two. I should be getting a hip replacement wtihin a month or so, as long as the c reactive protein is ok and there seems to be no obvious inflammation and the prednisone is low. I am hoping to be walking much better.

Have they suggested any joint replacement for your situation? I hope your new medication works and you feel better, stronger. wishing you health, all my best, Whittlesey U. S.

[trish29 in reply to Whittlesey]

Hello Whittlesey .I'm sorry I have been so long in replying to you but what with the Christmas preparations and then coping with the pain and exhaustion I am too tired to do much posting in the evenings. I saw my Rheumatologist yesterday and fortunately my MRI scan showed wear and tear /Osteo arthritis to the Spine and Knee and wants me to continue on 10mg Amitriptyline and to start in the New Year to get the steroids down again but SLOWLY .He would be happy with just half mg a month and hopefully to get some weight off which has gone on with the steroids and not being mobile through my pain etc..He hasn't suggested any joint replacement as I am up too high on steroids 14mg. I wish you much better and to be Pain free Merry Christmas and Thank You for replying to me trish29

[Whittlesey in reply to trish29]

Hi Trish, glad to hear this and Merry Christmas to you, too. I'm glad no joint replacement has been suggested. really good news. My hip operation also has to wait until the surgeon feels the prednisone is down low enough and that my heart is ok. Hopefully will be in a few months. walking is difficult for me, also. Glad the reports were good and wish you continuing good results and health. all my best, Whittlesey

[Celtic PMRGCAuk volunteer]

Hi Sue

Nice to catch up with all your news, though not so nice to hear that you are still struggling to get the steroid dose down in spite of trying various other meds. Let's hope the Humira proves successful for you.

It sounds as though at least you are blessed on the home front with a lovely hubby and all going well with the rest of the family. A very happy Christmas to you too and hope to hear better news of your health in the New Year - enjoy that "go faster" scooter!

[Sue8 in reply to Celtic]

Oh I love my new scooter, it has given me a new lease of life now I can get out and about again. I still miss being able to get on a bus and go to the city though. I haven't heard anything yet about when I am getting my delivery of Humira, it is long winded trying to get new meds from the hospital. Have a lovely Christmas x

[janimaths]

Hi Sue,

Left Scotland to its Howling gale and rain yesterday to Merrier and dryer England to visit daughters and grandchildren. Sleepless in spare room, having a look in at the posts and there you are! I've been wondering about you. Really sorry to hear you have been having such a time of it and I sincerely hope for a turn around for you. It seems you are always

so appreciative of your family and a really good husband and if I remember - a son who is a nurse but doesn't live near you? I always took my hat off to you doing home schooling for your children. Soldier on wonderful woman. Wishing you all the joys of Christmas and a better New Year in 2014.

[Sue8 in reply to janimaths]

aww bless you. Yes a son who is a nurse and is also on Humira for Ankylosing spondilitis. He does live about 80 miles away and has just moved home. I went to see him in July for his 30th Birthday but it about killed me. After 45 mins travelling I was crying with pain and had to be helped to the loo in a service station. My sugar went hyper also so won't be doing it again anytime soon though he keeps asking when I am gonna see his new home. He is however moving again next year only to the USA as his wife is American. He will also be giving up his nursing career which is very sad. They are coming for Christmas dinner and I am looking forward to that. Have a lovely christmas x

[Whittlesey]

Hi Sue8, am new to this blog. Wish you all the best. I have newly diagnosed GCA, had problems with initial high dosages of prendisone, am now on medrol and methetextrate which are working, now. was diagnosed with Cushingoid's syndrome, due to some initial high doses of prednisone. herbs and the anti inflammatory have helped. keeping the medrol down seems to help, but with problems, I take the higher dosages. very sorry to hear about the RA. It does sound like you have a lovely family, who understand and help. That is wonderful. and congratulations on home schooling ! Many do this in the U.S. (where I am posting from) and some very good things have come from that. Sounds as though they have with you also. nice posting with you. And I wish you the best Christmas and New Year. all my best, Whittlesey, NYC U.S.

[Sue8 in reply to Whittlesey]

Thank you and a merry christmas across the miles to you. I hope to post more often in the new year as I have been very lapse of late.