Anybody experience pins and needles with PA

Hi Robert

How are you doing now? Sorry it's taken so long to reply to you especially after reading how unwell you were. I developed severe pneumonia whilst taking Humira 3 years ago + like you was hospitalised for over a week. After 3 months Humira (which had been working well) was restarted however without success. My rheumy suggested that my body had formed antibodies so that was the end of that.

4 weeks ago I started taking Apremilast, a 2nd daily pill. No relief yet. I'm going to hospital every 4/5 weeks to get both knees aspirated and multi site cortisone injections. It's the only thing that reduces pain and increases mobility. Having "fat" knees is very restrictive. Apremilast is the 9th conventional treatment I've been on now, I'm lucky I have a rheumatologist who continues to seek a solution. My inflammatory markers, both CRP & ESR have been sky high for over 12 months & as Dr X explained to me yesterday, that's the key, to reduce inflammation, that's when the disease is under control. Unfortunately, I'm still on daily steroids currently 20mg prednisilone. It's awful stuff, I thought the bloating in face and torso was due to fluid retention but Dr X told me that steroids redistribute the body fat. It's horrible Robert, I have a fat moon face. I can't bear to look in the mirror and I'm going out less and less which is not good for mental health, is it? My skin remains clear, it's the joints that are receiving the full blast of PsA.

Are you still on Cimzia? I had such high hope for Cosentyx as it works in a slightly different way to the other bio's (not for me sadly).

There are 2 drugs currently available for RA which should be approved for PsA in December - Baricitinib (unsure of spelling) & Tofacitinib, if you fancy some light reading!!!!

I have asked DWP for a review of my PIP. I receive the lower rate for mobility but have had to use a bed raiser etc etc for over 6 months and crutches are a must. Will let you know how it goes. It's the chronic pain that really pulls me low, just no escape despite heavy duty painkillers. I'm currently trying alternative stuff, Reiki, Acupuncture, Chakra balancing & would be interested to hear from anyone who has had good experiences or if I'm wasting my money!!

Once again, dear Robert, sorry it's taken me so long to reply; you are certainly in my thoughts

Sheila xx

So sorry to hear how much pain you are in. Good to hear you have a decent Rhumy that is looking after you and persisting to get you as good as possible. 

I agree it is not good for you not to go out for your health or mental health.

Yes I am still on Cimzia, although I dont feel it is working as well as it was before the pneumonia. 

Dont worry about the time it takes to reply we all have busy lives. I hope your health starts to improve very soon. 

Best wishes 

Robert xx

Sheila, I also have psoriasis and psoriatic arthritis.  For me, changing my diet somewhat has made a huge difference.  I have much less pain now.  Upon the advice of my doctor,  I stopped eating nightshade vegetables and milk products (including cheese).  

I used to eat tomato and cheese nearly every day, so it was weird at first to stop eating these foods, although I felt so much better I was able to get out of bed and get some things done.  Then, without thinking, I ate a couple bites of cheese and I was back in bed for about 10 hours with bad pain again.  There's something in these foods that seems to overstimulate the immune system.

Other nightshade vegetables are potatoes, eggplant, and peppers (including paprika.)

I also use flexible cold packs on any small areas of intense pain that bother me, like feet, hand, wrist, knees.  They help calm down the inflammation and pain as well.

Robert

I also have pins and needles in my hand every morning after sleeping.. also if I sit In a particular position for too long 🤔 Does this sound familiar to you?

Hi Robert,

While since we've spoken, just wanted to say hi and ask how you're keeping? I think you were experiencing good results from Cimzia and sincerely hope that's still the case. Unfortunately, it was not the one for me. I waited for 8/9 months last year for Cosentyx to be licensed by NICE for treating PsA and was delighted to start taking it in June 2017. It works in a slightly different way to other bio's so I was very hopeful it would be The One! (Enbrel, Humira, Stelara, Cimzia, plus 3 DMARD's unfortunately not worked for me). Initially, I had a good response, 3 months where CRP & ESR markers reducing. Then from October on my monthly bloods shot back up, pain increased, mobility decreased. I saw my rheumy 2 weeks ago for aspiration of both knees plus another methylprednisilone infusion. For the 1st time, he said we're running out of treatment options - however there is 1 (totally unpronounceable name) currently used for RA that may be licensed. Meanwhile, it's painkillers, daily steroids (now 17.5mg down from 30mg), TENS machine & Gin! I know 3 people who share this disease who have achieved remission with one of the above bio's and I will be honest, I'm envious! I worry about the osteoporosis I have and would like to stop the steroids. I had a simple fall in December down 4 stairs and broke 4 bones; Rheumy concerned so arranging another bone density scan. I wonder whether to stop the steroids (rheumatology team say no). Truly don't know what to do. Without a doubt PsA is progressing, mobility is decreasing and I am frightened of what the future holds. I try to remain positive, perhaps the disease will 'burn out' as it does for some people. My aunt had Lupus for 11 years and that's what happened to her.

I truly hope you are well and enjoying life. Sheila xx

How nice to hear from you. Sorry to hear you are going through the mill with the PSA and your accident.Hopefully you will get the new drug once it has been licensed.

You are correct  I am still on Cimzia and yes intially it was great, that was until last March when i got Pneumonia. I had been getting like a virtigo feeling for about 2 weeks before I told anyone including my wife when it suddenly got worse, went and saw the doctor who was not happy with me and my symptoms so carted me off to hospital 7 hours later I was send home being told it was a viral infection take paracetamol and i will be ok, Almost a week later I was worse than ever another doctor visit and back to hospital when low and behold Oh you got pneumonia erm no Shxt sherlock I was down to only being able to breath for 90 seconds without oxygen ( they said another 2 days and i would of been pushing up the daisies lol, 9 days later I came out of hospital two and a half stone lighter ut a lot better less than 24hrs later I was back in with an allergic reaction to one of the meds which brought me out in a rash from head to toe in less than 30 mins so had another 3 days in hospital until they found out which drug caused it. then again 5 weeks later admitted back for a chest infection for another couple of days. Since then I had to stop methatrexate as liver function started playing up but then the psoriasis came back so rhumy put me back on a lower dose which has cleared the psoriasis up again and bloods still coming back ok, As for the cimzia It is not working as well as it was before the pneumonia hit me. I have put the weight loss back on plus a few more pounds so not great, I having a lot of back pain with my back giving way on a daily basis most weeks I have also now got my left thigh going numb on me all the time no matter if I am sitting laying down standing or walking, Doctor thinks it is a trapped nerve and given my Narproxin for it which is not making any difference, advised to wear looser clothing not wear a belt and try to lose some weight. none of which is working or helping. So my condition is now worse than it was 12 months ago. Also told I have COPD now too. 

Had a reassement for PIP a little while ago and was given PIP again for another 5 years. 

Otherwise I am all good lol 

Rob x