Winter Blues

[cropredy]

I inject Erelzi nee Enbrel for my RA which was diagnosed when I was 22 I am now almost 73. I am fine apart for the odd flare up for most of the year but I suffer from colds and chest infections throughout the winter months. I suppose this is down to the fact that the immune system is suppressed. Does anyone else experience this?

[Deniseelk]

I have only been diagnosed nearly 4 yrs ( but took 18 months to diagnose) and am injecting Benepali. I cannot imagine over 50 years of battling this disease. So, firstly, very well done with coping with this horrid disease! I can only imagine how truly difficult it must have been particularly in the early days. You must have seen a lot of ( hopefully good) changes over the years. I must say I have been very lucky and not seen any frequency in illness..... however I have always been very good at exercising and healthy eating. I must say since being on Benepali I do not put myself in situations where I may pick up germs ( in hospitals wait out in a hallway, move away from anyone coughing, etc)!!!! I hope you recover from any infections quickly!!! Have an enjoyable rest of the Christmas break.

[Mmrr]

Goodness that is a long time to live with RD.

I've been unwell with RD for 3 years, but suspect it has been with me for much longer. I don't usually get a lot of cold or coughs but have done more so over the past few winters.

It drags you down at times.

[Vixen2]

Hi Cropredy.

I’m in my 40’s & like you, was diagnosed with ‘reactive arthritis’ when i was 21. Although sometimes they call it ankylosing spondilitis. At the beginning i was put on loads of anti inflammatories, steroids, painkillers, as i was walking hunched over with a stick like an 80yr old. I had just been married. Instead of starting my adult world as a strong, young & inlove newlywed. My husband half became my carer. Then i was so bad. I had to move back with my mother. I was lucky though, as she was a nurse. But i felt for her. She’d be nursing strangers on the ward & then come home & nurse me! This disease is awful. I know it’s not ‘life threatening’. But it’s literally a pain. Not only do i have awful joint stuff. I also have iritis. (Inflammation of the eye). I also have glaucoma. So i’ve been going to Moorfields eye hospital in Central London for 27yrs. Had steroid injections in the eyes. 1 cataract removed when i was 26 & 1 removed when i was 40. Plus 2 steroid implants injected into the eyes. (So painful). I’ve been on Inflximab for 13-15yrs. It stopped working this year. My vision was deteriorating. (I was scared to leave my flat. I couldn’t see the pavement). Was getting very, very painful iritis attacks. So many steroid drops. Then my Rheumatologist & eye Consultant suggested Humira. I’ve had 2 injections. The last 1 i did on my own just the day before Christmas Eve. I was so disappointed. I was unrealistic. I thought i’d be doing cartwheels the next day. But i’ve read it can take up to 3 months to properly get into the system. I’ve already had this flare up for 2 months. This is the worst flare up i’ve ever had in over 20yrs. The pain has been crippling in my back & feet. (Awful spasms. Like i’m having electric shocks). Plus the iritis is back in both my eyes. I’ve been on so many painkillers, anti inflammatories & eye drops over Christmas. I know there are people worse off than me. But this disease is bloody awful. You feel old before your time. I am grateful though. That we now have these treatments available to us.

Cropredy. It must have been an awful story when you were first diagnosed. What sort of treatment did they give you then? (Sorry i rambled on).

[cropredy in reply to Vixen2]

Thanks to all who replied to my post Winter Blues. I was just 21 when I was diagnosed and believe me it was a terrible shock as I was a very active at the time. It all started with a pain in my left shoulder which came and went in a few days. Then it flitted from joint to joint and I become feeling quite ill. The tests etc took quite some time before it was confirmed that I had RA. Well the only drugs back then was aspirin and I was taking 16 a day. I then was put on new drugs as they came on the market some I must say with terrible side effects. My mind set was to be positive about my situation and to not let it take over my life and that is how I feel about it today.

Long story short I went through various problems over the years, drug changes joint injections etc. I've had spells of years feeling ok and years suffering major flare ups. the treatment I have had from the NHS as been brilliant and today I am injecting Erelzi which touch wood as been marvelous apart from the infections, but hey you cant live under a rock and stay clear of people. I joined NRAS and also attended a local group of fellow RA sufferers and it was great to meet folk like myself and swap stories about you RA . Sadly our local group had to close but I do recommend that if there is a group near you give it a bash.

Hoping you all enjoyed Christmas and I wish you a Happy Pain free New Year.

[Vixen2 in reply to cropredy]

Hi Cropredy.

It’s great that you sound like a positive person. I have to say. I find it hard to be positive when i’m having a major flare up. The last 2 years have been crap for me. I lost my lovely, kind, funny, strong mother 2 yrs ago. We were very close & since then, i’ve had alot of health problems. I have iritis (inflammation of the eye). Very painful & the vision gets worse. I’ve had injections actually in the eyes. I have glaucoma too. All because of my reactive arthritis. When i was 21 i had severe pain in my right big toe & severe pain in my left shoulder. Plus very bad conjunctivitis in my right eye. After 5 days in hospital. They told me i have arthritis. So i was put on loads of anti inflammatories, steroids & painkillers. I had only been married 6 months. My husband became my carer. But without my mother’s nursing. (She actually had been a nurse & was very patient with me. I can be so moody when i’m in pain!!) They put me on an Infliximab infusion every 6 weeks. I had that for about 13/15 yrs, but it stopped working this year. Now i’m on Humira. I inject it every 2 weeks. Only had 2. They say you need to be on it about 3 months before you see any progress. I’m so grateful for this option. Cropredy. You were on 16 asprins a day? Bloody hell. You could have been seriously ill with that dose. Medical science is fantastic nowadays. It’s like people with diabetes type 1. (My boyfriend has it). It’s awful enough that he has to inject himself every time he eats. But my mum told me the awful thing diabetics used to have to do before. Now there are the pens that they use. Before they were really big needles & they could mostly only eat CABBAGE. How horrible. That was mostly their diet. They couldn’t eat much else. I would kill myself if i couldn’t eat what i want. I love my food! Anyway. I love your positive outlook Cropredy. It’s great.

[sylvi]

DO take a daily dose of vit. C. my darling. Speak to your pharmacist to ask them what you can take. xxxxx

[vonniesims in reply to sylvi]

Vit D very important too. My GP says everyone should be on it in the winter

[oldtimer]

It's good to hear from another long-lifer - although I didn't start until the age of 37 years. Treatments now are so much more effective, but in other ways the NHS seems to be falling to bits because of shortage of money, staff, premises and equipment. Patches of excellence here and there, but too much poor practice also.