Drugs advice
The following are a selection letters received from members of the public which were originally reproduced in arc's quarterly magazine, Arthritis Today.
Views expressed in the Hints Box are those of readers, not those of arc.
Be aware of NSAID side effects
I am writing to inform people about the use of tablets such as diclofenac and naproxen which can lead to internal bleeding from stomach ulcers. Very recently I was given naproxen to try out as I found the diclofenac not to be working as well as before. The change brought about a stomach ulcer which meant that I lost a significant amount of blood and was admitted to hospital. I believed before that this was an unusual effect but I now realise that it is a common issue with non-steroidal tablets.
David Webster, Inverness
Anti-TNF therapy helps me enjoy walking again
Only a few months after beginning anti-TNF therapy I booked up a gentle walking holiday in the Highlands and glens of Scotland. To my sheer delight I was able to do a few hours purposeful walking everyday – my walking sticks being good companions. So many non-disabled walkers use these sticks, so I didn’t seem any different from other hikers. Having rheumatoid arthritis and other related conditions I feel VERY privileged to experience and regain some of the physical and psychological energy of past years. It seems SO unjust and illogical for folk to be denied such positive intervention.
Jessie Turner, Thames Ditton, Surrey
Alternative to Co-proxamol
I read in Arthritis Today Spring 2007, Mrs Walker from Polegate is trying to find an alternative to Co-proxamol. I have rheumatoid arthritis and was very disappointed to lose Co-proxamol. My doctor suggested tramace, which I find very helpful. It is not as strong as tramadol.
Elizabeth Pollington, Crowborough, East Sussex
Statins can cause muscle pain
Regarding the article on statins in the recent copy of Arthritis Today, I think it is extremely important for the magazine to point out that statins can cause considerable muscle pain in some people. I was put on simvastatin as a part of the current trend to prescribe it as a prophylactic to elderly people and ended up aching from my ankles to my shoulders. Only when I went on to the internet and put muscle pain and statins into a search engine did I find the extent of this problem. I repeat, I think you need to warn arthritis sufferers of the possible side effect. They may think their arthritis is getting worse.
Charles Cooper, Hanley Swan, Worcestershire
I'm now back on Co-Proxamol
I have continual discomfort from osteoarthritis all over with little hope of much improvement. Arthritis Today has given me much advice over the years and I coped fairly well with Vioxx and Co-Proxamol, and lived actively. Without warning, both medicines were dropped from my repeat prescription list and substitutes provided, upsetting me seriously and leaving a lot of horrid pain, day and night. Page five of issue 131 has given me great relief, for I immediately showed it to my GP, asking for Co-Proxamol on a named patient basis. He seemed unmoved (having specifically denied its existence) and just handed me a scrip. So now I am returning to a reasonable life – with activities restored. Thank you very much!
Gwen Green, Birchington , Kent
Can anyone stop me itching?
As a newly diagnosed rheumatoid arthritis sufferer, I would appreciate any advice from others on the relief of itchy skin caused by an allergic reaction to methotrexate. Having tried anti-histamines and lots of over-the-counter creams and potions, all advice would be appreciated in my quest for a good night's sleep.
Kim Bell, Bromward, Herefordshire
Creams to stop itching
In reply to Kim Bell and "Can anyone stop me itching?" (The Hints Box, Arthritis Today 125) I too am on methotrexate injections, which I found better than tablets. For the itchy skin I use Forever Living Aloe Propolis crème which has helped so much. I hope it works for Kim. It's nice to hear about other people using methotrexate.
Pat Oborn, Swindon, Wiltshire
My doctor prescribes a cream called Calmurid HC Cream for me which is wonderful. My RA is advanced so perhaps it would be suitable for Kim too. Good luck.
Bery Sutcliffe, Thornton Cleveleys, Lancashire
I have suffered from itching too. My doctor recommended me to use Dove soap, which is unperfumed, and I have had no problems since. I do hope this will help.
Mary Whitburn, Paignton, Devon
Aloe vera reduced infections suffered as side effects of anti-TNF therapy
I have suffered from severe rheumatoid arthritis since 1994. I was very lucky to go on one of the trials for the new anti-TNF drugs on 1998, which basically saved my life. However, the downside of the treatment for me has been the increase in and severity of infections, which has had me highly dependent on antibiotics over the past few years. When my son was suffering a serious post-operative infection which could not be relieved by antibiotics, a friend suggested I try him with aloe vera. It worked brilliantly – so much so he avoided a second operation to cut out the infected flesh. I decided to try it for myself, and found that I went eight months without antibiotics, and suffered far fewer infections. Not only that, but I also found that I felt so much better and that my arthritis didn't seem so bad. I decided to see if I could reduce my conventional drugs, and under the auspices of my fantastic GP and with regular blood tests have found that my disease has improved dramatically, and my inflammation scores are lower.
Angela Otley, Kegworth, Derbyshire
Messages of hope for those with polymyalgia rheumatica
I have a message of hope for polymyalgia rheumatica sufferers. I contracted PMR in 1984 and after years of taking prednisolone, getting down to 5mg per day over the past ten years, I had another go at slow reduction earlier this year. Pleased to report that I took my last 1mg tablet in June 2000 and I still feel great.
R Lawrence, March, Cambridgeshire.
Several years ago I suddenly began to fall flat on my face for no obvious reason – no dizziness or warning. My GP immediately referred me to an orthopaedic consultant who diagnosed spinal stenosis. After a week in hospital waiting for an operation it was suddenly realised I had been diagnosed on someone else's scans – back to square one! I spent the next two years being referred to one specialist after another by an increasingly desperate GP to six different hospitals. But all to no avail. I was even diagnosed by one consultant as having an "anxiety problem"! In the meantime I was becoming constantly nauseous, in pain, losing weight rapidly and becoming so weak that I had to be helped to bathe and couldn't even open a door for myself. Then Eureka! I was sitting in the doctor's surgery feeling very sorry for myself when he said: "Polymyalgia rheumatica!" He did some tests and put me on a strong dose of steroids. It was miraculous – within 48 hours I was picking up and getting back to normal. Now six years on I am still on low dose steroids, but the PMR is under control. Thank goodness for a patient and concerned GP who knew me well enough to know that I wasn't suffering from anxiety!
Pamela Dunn, Aldershot, Hants.
Enbrel has improved my life 100 per cent
I would like to add my view in light of the recent news regarding anti-TNF therapies. I had tried nearly all the second line drugs currently prescribed but none of them were effective enough to enable me to continue working (or living normally for that matter) and I was becoming very despondent. Then in November last year my NHS Trust in Devon agreed to fund Enbrel. UNBELIEVABLE RESULTS! I am back at work three days a week and have the energy to enjoy family life again with my husband and daughter. Like all sufferers of rheumatoid arthritis and other related illnesses ours is a very misunderstood disease and it is time the government realised that proper funding of a drug that can turn a life around is really worth the money. Since starting Enbrel I have had two RA related sick days from my employment as opposed to nearly six months last year, so that speaks for itself. I realise it's not a cure but in a way it is – don't they say it's all about the quality of life? Well, mine just improved 100 per cent. Thank you for your continued research.
Clare Augarde, Truro, Cornwall.
TNF therapy is like a miracle
Two weeks ago I had my first dose of infliximab. Miracle release. One hundred per cent reversal of the condition. I feel a new human being. I am 59, a pharmacist, and all my regular drugs, at maximum dose, have failed. I had deteriorated so badly over the past 12 months to the point where I finally had to admit that I could no longer cope with my job, and the prospect of losing my home was real. Then Dudley health authority agreed funding and I became one of only three to receive the treatment. I am so lucky. I cannot believe the extent of the improvement. One week after the first dose was the occasion of my daughter's wedding - I enjoyed it to the maximum. Ten days earlier it was debatable whether or not I would even be there. The ARC must campaign and push for all people like Dale Wragg (see cover story, Arthritis Today 114) to receive this treatment. It is criminal that suffering should continue when relief is available. At the end of the day, the cost to society is huge, taking into account the cost of benefits, loss of revenue though income tax, and losing valuable members of the nation's workforce. Anti-TNF is cheap in comparison.
Keith Round, Dudley, West Midlands.
Is Zacin any good?
I have recently requested a prescription for Zacin for my elderly mother who has severe osteoarthritis of the hip. He has refused to prescribe it on the grounds that it would be of no benefit at all, but without giving his reasons, however hard I pressed him. I am a great believer in trying most things to try and relieve pain, and I would be interested to hear of any other readers' experience of this prescription-only, rub-on cream.
G Brown, Hitchin, Herts.
Is Zacin any good? Yes and no
I have osteoarthritis in my left knee. I tried Zacin, and on the second day of application I was able to move about without any aid or support of any kind.
I L Morris, Colwyn Bay.
I have tried Zacin. My doctor was also sceptical but he gave me a prescription. Sad to say it did me no good at all, and only have mild arthritis.
I Mulcock, Cliftonwood, Bristol.
The benefits of Synvisc
I am currently waiting for a knee replacement. I also have private treatment for spinal disc problems. The orthopaedic physician whom I visit for this suggested that I could be a suitable case for Synvisc injections into the knee joint to relieve my arthritis. After the first injection the improvement was remarkable. The worse knee was treated and it is now by far the better one. I can now walk further and easier than I have been able to for a long time. The second and third injections have not produced such impressive further improvement… but I would certainly recommend potential knee replacement patients to ask their GPs about this option.
R.A Stevens, Croyden, Surrey.
