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Learnt to live with it and get on with life

I was diagnosed with psoriatic arthritis nearly 5 years ago. I had had lower back pain for many years and put this down to my job as a dental surgeon. Prior to my diagnosis I had seen specialists about problems with my feet, my dry eyes and had also seen a pain specialist and had radio frequency ablation to the nerves to my sacroiliac joints on two occasions with two years in between the different episodes.

It took a rheumatologist to put all the pieces of the jigsaw together and diagnose me with psoriatic arthritis.I have very little in the way of psoriasis except two very small patches (one on each elbow)but have always had the nail lesions but even then,not very badly.My father had a patch of psoriasis on his leg but it never caused him any problems; this is the genetic connection.

I was diagnosed with an autoimmune neutropaenia alongside the arthritis and this has caused me problems with the various medications used to treat my arthritis. At first it was thought that I might have Systemic Lupus Erythamtosis as neutropaenia is a feature of this disease. I was prescribed hydoxychloroquine first of all but soon developed an allergic reaction to this medication. Subsequently I was tried on sulfasalazine and methotrexate. Both of these drugs lowered my white cell counts to low values and neither had any effect on the arthritis.

I was finding it very difficult to walk on account of the pain and eventually I was considered for biologic medications. I am now having golimumab injections monthly supported by the use of GCSF [granulocyte colony stimulating factor] medication to boost my white cell and neutrophil counts prior to the monthly injections of the golimumab.

I am very grateful to be receiving golimumab and feel lucky that the NHS funds this for me. Whilst it is a good drug it does not eliminate all the problems associated with the arthritis and my knees,elbows and ankles have remained tender when squeezed until the present time.

My wish would be for more research to be put into the effects of enthesitis in psoriatic arthritis and for researchers to stop treating PsA as the "poor relation " to rheumatoid arthritis and thinking that the results of trials for drugs for RA can be extrapolated to PsA. THEY ARE TWO DIFFERENT DISEASES WITH DIFFERENT GENETIC INHERITANCES. Researchers take note !!!

I would also like doctors to listen to their patients more and to credit them with knowing most about what it is like to live with this disease. Reading a textbook does not equate to first hand knowledge of the subtle effects of the disease. Just because a joint is not swollen does not mean that it is not painful !!!!

Some days I feel very fed-up with having the arthritis but for the most part have learnt to live with it and get on with life so that it does not get the better of me.

Submitted by a 62 year female living in England

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