Diagnosis of Polymyalgia Rheumatica - Advice needed

[livinglighter]

I've recently been diagnosed with Polymyalgia Rheumatica. I'm seeking advice from others who have it or are familiar with the condition.

I'd like to know if anyone noticed a reduction or exacerbation in other symptoms once they started drug management for the condition.

On the one hand, I'm glad further testing and assessment are producing something. Still, on the other hand, I'm not impressed that had they just been identified earlier, I wouldn't be suffering unnecessarily with several treatable afflictions.

 

[InitialConditions]

Not diagnosed with this and therefore I can't offer much advice, but I would be interested to know what your symptoms are, and how it affects you, and how you distinguish it from overlapping ME symptoms?

 

[Jonathan Edwards]

I am very familiar with managing polymyalgia.
I cannot give specific medical advice but can comment on things in general.

 

[livinglighter]

Not diagnosed with this and therefore I can't offer much advice, but I would be interested to know what your symptoms are, and how it affects you, and how you distinguish it from overlapping ME symptoms?

Very hard for me to decipher as I'm also not sure if the pain and stiffness I have now progressed from the commonly reported ME/CFS muscle aches I experienced, or if the agonising pain and stiffness are new onset/overlay. I also suffer from other musculoskeletal conditions which cause pain.

I didn't have this level of pain and stiffness before, but I am unsure if this kind of thing comes about progressively or is sudden. My reduced movements seemed quite sudden to me. I used to be able to turn in bed then following my initial covid infection, I couldn't after a short while. Since then, I keep getting stiffer and feeling more pain.


Here are some things I complained about during my assessment.

• Severe stiffness that is worsened and unrelieved by stretching.

• Severe stiffness is far more pronounced in the mornings and nights.

• Stiffness if stationary for short periods.

• Being unable to turn in bed.

• Not being able to dress/undress as well due to reduced movement and pain.

I also have high levels of CRP and had to answer a long range of questions which I can't remember but the outcome was polymyalgia.

 

[livinglighter]

I am very familiar with managing polymyalgia.
I cannot give specific medical advice but can comment on things in general.

Thanks Jonathan.

It would be great to know if you came across any other patients with ME/CFS who reported improvements in their symptoms once they started treatment. Anti-inflammatory meds seem to cause a noticeable reduction in my symptoms.

I'd also like to know what you found worked well for long-term treatment.

 

[Jonathan Edwards]

I am not quite clear what you are asking.
Which treatments and for what?
Polymyalgia is largely treated with corticosteroids, although non-steroidal anti-inflammatories may produce some benefit.
In terms of ME, response to treatment seem unpredictable and disappointing.

 

[livinglighter]

I am not quite clear what you are asking.
Which treatments and for what?
Polymyalgia is largely treated with corticosteroids, although non-steroidal anti-inflammatories may produce some benefit.

Apologies, I wasn't quite clear.

I’m unaware of all the medications used to treat Polymyalgia, but I understand anti-inflammatory drugs are used, such as the ones you mentioned. Sometimes people find drugs used to treat a particular condition can sometimes alleviate other non-associated symptoms they suffer from. Such as, in my case, I've found non-steroidal anti-inflammatories prescribed for headaches can also alleviate other symptoms that are often present with my headaches, so I'm asking if you've come across anecdotal accounts from patients with ME and polymyalgia who reported a reduction of other symptoms they also experienced when taking medication prescribed for polymyalgia?

In terms of ME, response to treatment seem unpredictable and disappointing.

That doesn't sound great. Thanks for letting me know.

 

[Shadrach Loom]

Apologies, I wasn't quite clear.

I’m unaware of all the medications used to treat Polymyalgia, but I understand anti-inflammatory drugs are used, such as the ones you mentioned. Sometimes people find drugs used to treat a particular condition can sometimes alleviate other non-associated symptoms they suffer from. Such as, in my case, I've found non-steroidal anti-inflammatories prescribed for headaches can also alleviate other symptoms that are often present with my headaches, so I'm asking if you've come across anecdotal accounts from patients with ME and polymyalgia who reported a reduction of other symptoms they also experienced when taking medication prescribed for polymyalgia?



That doesn't sound great. Thanks for letting me know.

N=1 for corticosteroids: hydrocortisone 40mg daily had an immediate exacerbating effect on ME/CFS symptoms. Sorry.

 

[Jonathan Edwards]

Anti-inflammatories and steroids can help all sorts of symptoms but as indicted above, it is inconsistent in the context of ME.