Ask the difficult questions to your Consultants, Specialists and GP's.
Medication is the first line of treatment for Sjogrens Syndrome Patients. It is only natural to have faith in the medication prescribed by medical professionals to deal with our condition.
Over the past few years I experienced a rapid decline in my overall health, severe breathing problems which resulted in an inability to move properly, walk and other significant problems related to excessive weight gain, severe chest pains below both lungs. Bowel problems, a rapid and excessive build up of water within the body which only added to the breathing problems.
Any walking movement was accompanied by loud panting for breath before movement was rapidly curtailed, This was followed by about twenty minutes trying to relax and calm the body down, but still painfully gasping for breath. Pain remained ever present.
These problems were raised with a significant number of consultants, specialists and GP's over many years. The inevitable response was to pass the buck and tell me to discuss it with another department.
The NHS flavour of the present time was all too often wheeled out. You need to lose weight, the response of weight gain did not take place until I was put on steroids and other medication to treat my Sjogrens always appeared to fall on deaf ears. The NHS culture of the doctor knows best has to be questioned in a proper Sjogrens Syndrome Patient/Medical Professional Relationship.
It was not until the summer of 2016 when as a result of a fall I visited the Elbelandklinikum in Meissen (Germany) for treatment on the injury sustained in a fall and pneumonia on both lungs.
I was totally unaware of this, although the pain in the area below each lung was exceptionally painful over a long period of time and my then GP always referred to problems highlighted in Blood Tests over a long period of time, as "That is OK for you!" (It wasn't in reality!)
The German hospital immediately stopped my taking of two long term UK prescribed medications
1) Azathioprine 2) Steroids (Predisionol)
During my one week stay as a patient in Meissen I noted the beginnings of an improvement in breathing quality , which I had not experienced for many years. During my stay in hospotal in Meissen I attended a number of introductory sessioins on their "Lung Physotherapy Training Course" this was really a helpful course involving breathing training to correct the style of breathing, pulling my body into positions to help with breathing. I tried to continue this course in the UK but found the UK NHS alternative to fall a long way short of the German course. (An aea for the NHS to look into and adopt?)
The hospital would not authorise me to return to taking Azathioprine and this medication was recommenced after speaking with my UK consultant. Within about fifteen days my breathing problems had returned to "square 1"
On my return to Cambridgeshire I made an appointment with a highly qualified Pharmacist to review all medications being used to treat my Sjogrens Syndrome and four separate items were highlighted as being potentially very problematical in respect of side effect risks.
To move forward with this problem I had no alternative but to formally Contact the CEO at the hospital concerned and the regional CEO of NHS England (to look at GP level involvement).
The culture needs to change and medical professionals need to look more closely
with their patients in respect of adverse reaction to the drugs they prescribe. A check of my medical records revealed that there was a rapid decline in my health in the period following the date when Azathioprine was prescribed.
Since my care was moved to other specialists and a new GP practice progress has been positive. Breathing and movement improves each day, I am losing weight (not because of diet but because I can breath and move better).
We have moved from Cambridgeshire and are now experiencing an alternative way of running a health service over here in Germany.
The moral of this posting is to question medication with medical professionals and use the skills of a professional pharmacist.
I suffered unduly for years and it took hospitalisation aborad before I was able to discuss the problems with a medical professional who treated me as an equal.
BSSA and Cambridgeshire Support Group Member