Swollowing

[Carrollee]

Hi guys. Has anyone had swallowing problems with their PMR before treatment started. I did and it started to return as the pred is reduced! Ta for listening, cc

[Bailybiscuit]

I have felt my throat muscles involved but if I were you I would mention that to a Dr or ask to see a rheumatologist as there are other similar conditions I believe that do have that as a symptom. I was diagnosed with PMR over a year ago and always been classed as A typical. My Dr has always thought I had something else as well wrong and I have been diagnosed with sero negative arthritis as well, except I am doubting that as well as don't seem to fit in with what I read. I have found you have to keep on at Drs or else they just jog along and you get left to reduce your steroids until you flare and it could be another condition or that and PMR.

[Celtic PMRGCAuk volunteer]

Carrollee, do get this checked out with your GP or rheumatologist. If you had swallowing problems leading up to the diagnosis of PMR which immediately resolved following the Pred starting dose, then that may have been due to lurking GCA and resolved by the Pred, hence the reduction causing a return. Pred itself can occasionally cause a swallowing problem but that is unlikely as you experienced the problem prior to treatment. Just a thought, but you definitely need to seek medical advice.

[PMRpro Ambassador]

Yes - I had difficulty sometimes during the 5 years of PMR without pred. It felt as if I had to think about swallowing something at times. It was probably a sign that what I have was more GCA than PMR as I also had jaw claudication and one or two other signs. It all cleared eventually on 15mg pred.

[Sallyaches]

Hello Carolee, Can I ask if you feel a lumpy feeling when swallowing, I only ask as that could be a symptom of something like oesophagitis which may be made worse by the steroids. I had this and gastric erosion on endoscopy, mine was due to taking non-steroidal anti-inflammatories but I do know prednisilone can also be hard on your stomach. It was easily sorted out with lansoprazole.

Best wishes.

[Slach_na]

Difficulty in swallowing was my major symptom three weeks ago when I suspected I may have PMR or GCA. It went after one week on 15 mg pred. Other symptoms of very swollen neck glands, very stiff neck and hips, also disappeared on this short, low dose.

I am not keen to take pred. long term and therefore I am not taking it. Just painkillers and paracetamol. The problem is lurking, and my voice is hoarse. This is resolved by not using my voice, lots of rest, and careful monitoring of all symptoms.

I expect readers will find this self treatment disturbing. I do welcome comments. In view of the fact I become manic, confused, disorientated, and unable to make rational decisions on steroids, which made me vulnerable when I had PMR before, I have to question whether steroid treatment is essential. I am told PMR can burn itself out with or without pred.

In addition, at the present time, different doctors in the practice have, inevitably I now believe, different views on what "virus" I have, and they all have categorical, different views. I therefore feel I have to some extent to trust my own judgment. No doubt a referral to a rheumatologist would mean a prescription for pred.

When I became ill one GP thought i had flu and PMR together, as I couldn't get out of bed. A week earlier I had just recovered from 4 weeks with ? Chicken pox ?atypical shingles, as I was covered from head to toe with a very uncomfortable rash. So I think that the connection between these viruses does need further investigation.

I also feel that steroids are prescribed as a preventive measure often before a condition is definitively diagnosed. Pred is a very powerful drug and not to prescribed lightly. I have also noted that the dosage, ongoing tapering etc is so variable, it can appear arbitrary to the unsuspecting patient.

[piglette]

I am amazed you can manage without steroids, I would be in a wheelchair without them, no other painkiller worked. I don't think they are just a preventative measure. There is also the worry of GCA which at least steroids keep the inflammation under control.

[Slach_na]

I appreciate piglet ( I am sure you are not) that the condition varies in severity. I am having weekly blood tests to monitor inflammation. Its good they work for you. Thank you for your response. Obviously I do have concerns.

[Celtic PMRGCAuk volunteer]

"I have to question whether steroid treatment is essential. I am told PMR can burn itself out with or without pred."

I was undiagnosed and in bed for many months, attending hospital appointments by ambulance and wheelchair with what eventually turned out to be PMR. I recovered spontaneously towards the end of a year but the recovery was short-lived and even more severe symptoms arrived on the scene. Just under a month later both PMR and GCA were diagnosed.

So, yes PMR can burn itself out but at what cost? My muscles deteriorated from being immobile for so long, and there is every possibility that if my PMR had been diagnosed and the inflammation treated, I would not have succumbed to GCA. It is also possible that my reduced kidney function diagnosed at the end of that first year of illness could also have been caused by the untreated inflammation.

Thank Heavens for Pred!