Pip SMS PMR: Hi, I'm new here and have been... - PMRGCAuk (2023)


I am new here and have been diagnosed with PMR for about 4 years.

It went downhill from there. I'm still on steroids and my doctor wants me off them. I have symptoms but I decide to go back to her every 3 weeks and I will live with the pain. I also have brittle bones and osteoporosis, and my right leg is so weak that I have to use a cane. The doctor gave me Pip because I'm really unstable, I keep falling and breaking, and I'm bored. I live on a country road with very limited bus routes and even if they did come I would end up rolling like a marble as the buses would swerve and climb at high speed. My problem is related to pip. I only applied in mid-April 2016, I was met within three weeks, received a text saying I was eligible to apply for PIP, and the payment would be made to my bank within 2 weeks. I know these things are insulated, but I'm really hoping for better mobility. A medical health professional would not do a physical because it would be too dangerous for me. I can walk about 50 meters, but I can't walk safely without someone else because I'm unstable and have severe pain in my hip. I have a severe vitamin D deficiency because I don't go out alone. I cracked my skull and fell straight into the garden in front of the house.

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rose 54


I hope you get a higher PIP rate, but PMR is not a medical condition they support because they think it can be successfully treated with medication.

Many people with limited mobility were not allowed to walk with the help of crutches and two canes.

The time frame for submitting a request for a mandatory review was changed from 4 weeks to two weeks, and even then the original judgment could be changed or dismissed entirely.

Good luck


Chris Cherylto answerrose 54

Thanks, I know the PMR diagnosis is detailed, my physical therapist said it was not a diagnosis but an escape because I had very high inflammatory markers. Some things just don't add up. I have been taking steroids for over 3 years. They added osteoporosis and I had an early surgical menopause due to the tumor. I was 34 years old.

The weakness in the right leg was not due to PMR, nor was it due to a period of pain and stiffness and several days of extreme fatigue. PMR is not a problem. The main problem is falls and breaks. Something is swollen and it hurts a lot in my leg. I can't balance or lift him without a cane and I really need help. I've had enough of this and I don't want to live anymore. I broke 2 toes in 3 weeks. Before that, 4 sides, 3 front sides and back, I was in so much pain that I couldn't breathe. It's not that I want to die and leave my children, I'm just afraid to live. I wouldn't apply for PIP on my own, as the professionals told me. I know owning a car doesn't eliminate balance problems, but I can get on the bus without wobbly. I would also have another chance at life. Our minibus leaves late in the morning and ends early in the afternoon. I was very limited in what I could do and where I could go. I would even like a job and a volunteer position would help.

I am a qualified healthcare professional but had to give it up due to falls and mental health issues.

Thank you very much for your reply. I'm scared to death of finding out what percentage I'm entitled to.

Thanks again, nice to hear from you. I wouldn't get my hopes up too high.

Čaplja NSto answerChris Cheryl

I am very sorry to hear your question. you live alone? When someone is relatively cold and fast, it can sometimes be difficult to find enough support. We hope your condition will improve soon. I will hug you (very gently) virtually. 💕

Please stay in touch with us. we care.

Chris Cherylto answerČaplja NS

Thanks a lot. I live with my daughter and son.

My son has autism and I need rehabilitation.

I'm nervous about Pip. I know I have something, well at least I do. I don't know how people can handle months of waiting. I'm not claiming to be Pip, so I don't really know that much.

Thank you again, I can already feel the warmth of your hands x

rose 54to answerChris Cheryl


I really hope you get a good reward

Life is sometimes so unfair that we have to take drugs that cause other side effects that can have lasting effects on our health.

Praying that you will get it and be able to use it to get around and have a better quality of life, it will help make things better.

let us know how things go

You should receive it retroactively from the date you made the first call.

best wishes


Chris Cheryl

Hello everyone.

thanks on good wishes. I am happy to say that I received the Enhanced Mobility Kit. It will make my life better.

Thanks everyone for reading and responding. He was very helpful from start to finish.

I wanted to share my expertise with the forum, since my new proposal is relatively simple. I just need to know where to share it? I'm not very tech savvy.

Best wishes to you and your loved ones (my family is fine).


PMRproambassadorto answerChris Cheryl

You can write an article and make it a new topic.

Or you could write it up and send it to a charity - not sure if they have "useful information" on the site. Of course, submitting to the NE support team site will almost certainly result in it being posted there for use. I can also post it in the NE section of the forum where other patients can easily find it - I can easily do this by copying and pasting the post you wrote here, which you are used to. of course I believe you

Here's a link to the NE website - they have a "Contact Us" button to the right of the title:


long wave

I've had it for a year and this is the second time. You think a food allergy or sensitivity is the trigger. Tooth infection? What's your theory?

PMRproambassadorto answerlong wave

nobody knows. All kinds of unknown things can affect the immune system -- chemicals, infections, the environment, stress, and many others -- and eventually the immune system can become overwhelmed and out of control. There are hundreds of autoimmune diseases - we happen to have PMR. Honestly, it's not as bad as many things: it's not fatal, it doesn't cause serious organ damage, and 75% of patients go into remission.

Chris Cheryl

No one knows what causes it, so there hasn't been much research. It was related to a type of flu virus and about 4 weeks later I was sick for a terrible 3 weeks and it hit me like a train. I also had two horrible abscesses. Stress is also an autoimmune trigger. I also had radiation therapy after my thyroid went crazy.

With any autoimmune disease, relapse and remission can occur, but I did not experience remission. Good days and bad days yes.

I've never suffered from any allergies except for the nasty coconut scalp shampoo and patches that attack my skin, pig.

My job in the NHS is to diagnose, refer or develop short and long term plans to enable people to walk. If the legs are not working properly, there will be problems with the knees and hips, and eventually with the back. If proper movement is not present, other joints will compensate and become damaged. Life-threatening and serious infections of the extremities also require attention. Nerve damage and gangrene are not things that people with PMR experience or have to worry about too much. However, the fact that you are taking steroids not only puts you at risk, but also the clinical signs of infection are masked. I've seen people on steroids have terrible infections they didn't know they had. I know it's probably there, so I might look a little better or look a little better.

I do not see this disease in my clinic and medical education, although this is very detailed, exactly the same as the first year of the doctor.

There may be a predisposing factor or many factors that are still unknown.

When I was diagnosed, I was so interested in my medical books that I learned to turn the pages.

Now when I donate them to a charity shop, I feel like I'm studying the weather forecast when the bin hits the window. I decided it was completely personal.

I'm not yet fifty, so I decide not to watch anymore.

I had a miserable week, so I took the day off. Tomorrow will come quickly, today is irrelevant.

I have changed my lifestyle based on what I have learned on this forum.

I can walk my bird but I can't and he didn't complain. I didn't have a dog before so I got one and it was just the ticket I needed to see that life isn't over.

I was on it for 4 years and the meds weakened my bones and gave me crap that was probably made up by a monster. Now I take enough medication to deal with the other problems I have. My blood work was high again this month and I thought it would be because I was in so much pain. The doctor called me early in the morning after the test. I'm anemic and it scares me. I am happy when the test finds or completes the reason for the test.

Most of the advice I got that helped me came from the forums. I feel like the only people who understand are other patients.

They threw me a lot of medicine, I know a lot, but they don't tell me how to drink it, I found out here as well. I just hit them all at the same time. After a ridiculously long time, I don't know when to use what and when to use this and that. No one told me I was wrong. It is written here in plain English, how different it is.

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Can you drink alcohol with polymyalgia rheumatica? ›

Steroid treatment is usually very effective at treating polymyalgia rheumatica. However, because it can increase your risk of getting osteoporosis, it's important to think about other risk factors associated with this condition. Smoking or drinking a lot of alcohol will increase your risk of developing osteoporosis.

Can you live a normal life with polymyalgia rheumatica? ›

People with PMR typically respond well to treatment, and most eventually recover entirely from the disease within one to five years. With appropriate treatment and regular follow-up care, individuals with PMR, and even those who develop GCA, can experience a full and productive life.

Does polymyalgia rheumatica affect the legs? ›

The signs and symptoms of polymyalgia rheumatica usually occur on both sides of the body and might include: Aches or pain in your shoulders. Aches or pain in your neck, upper arms, buttocks, hips or thighs.

What triggers polymyalgia? ›

The cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible. Polymyalgia rheumatica is relatively common in the UK. It's estimated that one in every 1,200 people develop the condition every year. Polymyalgia rheumatica is age-related.

What foods make polymyalgia worse? ›

Foods linked to increased inflammation include:
  • refined carbohydrates, such as white bread or white rice.
  • fried foods, such as french fries.
  • sugary drinks.
  • processed meats, such as salami or hotdogs.
  • red meat.
  • margarine.
  • foods with added sugar.
  • alcohol.
Apr 30, 2018

Do you ever get rid of polymyalgia rheumatica? ›

Although your symptoms should improve within a few days of starting treatment, you'll probably need to continue taking a low dose of prednisolone for about 2 years. Polymyalgia rheumatica often improves on its own after this time. However, there's a chance it will return after treatment stops.

Does polymyalgia ever go away completely? ›

Without treatment, PMR does not get better. However, low doses of corticosteroids (such as prednisone, 10 to 20 mg per day) can markedly ease symptoms, often within a day or two. The dose should then be slowly reduced to a very low level. Treatment needs to continue for 1 to 2 years.

What is the life expectancy with polymyalgia rheumatica? ›

What Is the Life Expectancy for Polymyalgia Rheumatica? Polymyalgia rheumatica is usually self-limited and lasts months to a few years. If the condition is diagnosed and treated promptly and appropriately, patients have a normal life expectancy.

Does polymyalgia affect walking? ›

In severe cases, the stiffness may last for an entire day. Difficulty in performing daily activities, such as rising from bed, walking, or raising arms to comb hair is common. Climbing stairs or getting in or out of a car can also be painful.

Does vitamin D help polymyalgia rheumatica? ›

In a new study, investigators from Brigham and Women's Hospital found the people who took vitamin D, or vitamin D and omega-3 fatty acids, had a significantly lower rate of autoimmune diseases — such as rheumatoid arthritis, polymyalgia rheumatica, autoimmune thyroid disease, and psoriasis — than people who took a ...

Can COVID vaccine cause PMR? ›

One case of PMR relapse after COVID-19 infection (10) and two cases of PMR that developed after receiving a COVID-19 vaccine (6,11) have been reported. These two patients had no marked medical history, and they developed PMR within three days following the first dose of the COVID-19 vaccine.

What is the best pain relief for polymyalgia? ›

A steroid medicine called prednisolone is the main treatment for polymyalgia rheumatica. It's used to help relieve the symptoms. To start with, you may be prescribed a moderate dose of prednisolone, which will be gradually reduced over time.

What can I take instead of prednisone for inflammation? ›

  • Albuterol Inhalation (Ventolin)
  • Amoxicillin (Amoxil)
  • Azithromycin (Zithromax)
  • CoQ10 (Coenzyme Q-10)
  • Ibuprofen (Advil)
  • Levothyroxine (Synthroid)
  • Lexapro (Escitalopram)
  • Lipitor (Atorvastatin)
Jul 6, 2009

What is the new medication for polymyalgia rheumatica? ›

Kevzara® (sarilumab) Approved by FDA as First and Only Biologic Indicated for Patients with Polymyalgia Rheumatica.

How can I get rid of my polymyalgia rheumatica? ›

Polymyalgia rheumatica is usually treated with a low dose of an oral corticosteroid, such as prednisone (Rayos). You'll likely start to feel relief from pain and stiffness within the first two or three days.

Does PMR affect your hair? ›

People suffering from this disease have more and more difficulty getting out of bed and starting their daily activities. Other symptoms include: Hair loss that occurs because of a loss of appetite.

How do you beat polymyalgia rheumatica? ›

Steroid treatment is usually very effective to treat polymyalgia rheumatica. Steroids work by reducing inflammation. They can't cure your condition, but the symptoms will improve significantly within two weeks once steroid treatment is started.

How can I control my PMR without steroids? ›

Exercise, such as cycling and swimming, can help loosen stiff muscles and joints, while also promoting better bone health, body weight, blood circulation, and sleep. Yoga and tai chi can provide flexibility to help improve PMR joint and muscle symptoms.

Can magnesium help polymyalgia? ›

Low levels of either can lead to muscle cramps from PMR – magnesium supplements help. As with all supplements, you should run them by your doctor or pharmacist. I've found it helpful to keep a daily pain and dosage log.

How long does a flare up of polymyalgia last? ›

With treatment, PMR symptoms usually lessen or go away within days. Without treatment, they may go away after a year but could take up to five years or more.

Does walking help polymyalgia rheumatica? ›

Being sedentary can make PMR stiffness worse. Physical activities and hobbies such as gardening, swimming or just taking a walk in the park are a great way to keep you active. It is good to rotate activities in order to avoid the same set of muscle and joints from getting over fatigued.

What does the pain of polymyalgia feel like? ›

Polymyalgia rheumatica causes muscle pain and stiffness in the shoulders, upper arms, hip area, and sometimes the neck. The ache and stiffness are usually worse in the morning or when you have not been moving for a while. They can sometimes be very debilitating and tend to improve with activity.

Can polymyalgia go into remission? ›

My understanding is once you've been diagnosed with PMR you will always have it but it does go into remission and can flare at a later time.

What triggers PMR relapse? ›

Expert opinion: Relapses are common in PMR being observed in approximately half of the patients. They often occur when the dose of prednisone is below 5-7.5 mg/day. The speed of glucocorticoid tapering is considered to be the main factor influencing the development of relapses in isolated PMRs.

Is polymyalgia a form of arthritis? ›

Polymyalgia rheumatica (PMR) is an auto-inflammatory rheumatic disease of people over 50 years, presenting with pain and stiffness in the neck, shoulder and hip girdles1. The term PMR was first used to underline that it seemed substantially milder from rheumatoid arthritis (RA) as no joint damage had been observed2.

What happens if polymyalgia rheumatica is not treated? ›

PMR is usually a self-limiting disease. If untreated, patients will have an impaired quality of life. With early diagnosis and correct therapy, patients have an excellent prognosis. The average length of disease is 3 years.

Is polymyalgia considered a disability? ›

We are often asked, “is polymyalgia rheumatica a disability?” Polymyalgia rheumatica is considered a disability if your symptoms and limitations are severe enough to prevent you from working. If so, you can file a claim for disability benefits for polymyalgia rheumatica.

Does polymyalgia affect the heart? ›

In an earlier report, approximately 30% of PMR patients had at least one cardiovascular event (myocardial infarction or de novo heart failure) with a cumulative incidence reaching 50% by 10 years (3). Aortic stiffness has been also found to be increased in PMR and institution of steroids appears to be beneficial (4).

Is fibromyalgia the same as polymyalgia? ›

Fibromyalgia can occur at any age, but polymyalgia rarely occurs before age 50. The average age of onset is 70. And whereas fibromyalgia is chronic, often lasting a lifetime, polymyalgia usually resolves itself within two years. Treatment differs, too.

Can polymyalgia cause bowel problems? ›

Patients with polymyalgia may have perforated colonic or purulent diverticular disease which mimics their rheumatic pathology.

What is the first line treatment for polymyalgia rheumatica? ›

Medication Summary

The goals of therapy in polymyalgia rheumatica (PMR) are to control painful myalgia, to improve muscle stiffness, and to resolve constitutional features of the disease. Oral corticosteroids are the first line of treatment.

What vitamins are good for PMR? ›

Calcium and Vitamin D.

Getting an adequate amount of calcium and vitamin D are especially important. Spinach, broccoli, soybeans, chickpeas, almonds, calcium-fortified juices, sardines with bones, and several types of non-dairy milk (including soy, almond, hemp, and rice) are examples of foods rich in calcium.

How much vitamin D should you take for autoimmune disease? ›

For autoimmune management, doses of vitamin D can range from 5,000 to 10,000 IU per day. Some people take higher doses if their genetics hamper absorption. It's best to test your levels every three to six months.

Is hydroxychloroquine good for polymyalgia rheumatica? ›

Regarding therapy, I found that 85% of the RA patients treated with hydroxychloroquine (HCQ) were dramatically responsive to this medication (the remainder of the RA patients were subsequently treated with other disease-modifying anti-rheumatic drugs [DMARDs]) and continued to remain free of CS use.

Does polymyalgia rheumatica affect the hands? ›

Symptoms, such as pain or stiffness in the joints of the hands and feet, are present in approximately half of people with polymyalgia rheumatica, however, peripheral symptoms are also common in other, similar conditions, such as rheumatoid arthritis and other inflammatory arthritides.

Does Moderna vaccine cause polymyalgia rheumatica? ›

We present two cases that showcase the incidence of polymyalgia rheumatica after receiving COVID-19 vaccination. Patient 1 is a 69-year-old female who developed arm and thigh stiffness a week before the second dose while receiving her primary Moderna vaccine series.

What cancers mimic polymyalgia rheumatica? ›

Regarding specific types of cancer, some studies have proposed there could be associations between PMR and haematological cancers. This includes Hodgkin's and non-Hodgkin's lymphoma [56], myeloma [68] and other myeloid malignancies [63, 66].

How do you rule out polymyalgia rheumatica? ›

An ultrasound, positron emission tomography (PET), computed tomography (CT), or magnetic resonance imaging (MRI) scan can reveal changes consistent with the disorders, such as swelling and inflammation in large vessels, or may help rule out other diseases and conditions.

Can you have PMR with normal blood tests? ›

Blood tests.

Besides checking your complete blood counts, your doctor will look for two indicators of inflammation — erythrocyte sedimentation rate (sed rate) and C-reactive protein. However, in some people with polymyalgia rheumatica, these tests are normal or only slightly high.

How to tell the difference between polymyalgia rheumatica and rheumatoid arthritis diagnosis? ›

Classically, RA involves the small joints of the hands and feet but also frequently involves the knees, wrists, and ankles. PMR typically involves the neck, shoulders, and hips and never involves the feet.

What is the first line for polymyalgia rheumatica? ›

The goals of therapy in polymyalgia rheumatica (PMR) are to control painful myalgia, to improve muscle stiffness, and to resolve constitutional features of the disease. Oral corticosteroids are the first line of treatment.

What is polymyalgia pain like? ›

The most common symptom of polymyalgia rheumatica (PMR) is pain and stiffness in the shoulders, neck and hips, which develops quickly over a few days or weeks. Both sides of the body are usually affected. The stiffness is often worse first thing in the morning after you wake up.

Does polymyalgia ever go? ›

Although your symptoms should improve within a few days of starting treatment, you'll probably need to continue taking a low dose of prednisolone for about 2 years. Polymyalgia rheumatica often improves on its own after this time. However, there's a chance it will return after treatment stops.

What is life expectancy with polymyalgia? ›

What Is the Life Expectancy for Polymyalgia Rheumatica? Polymyalgia rheumatica is usually self-limited and lasts months to a few years. If the condition is diagnosed and treated promptly and appropriately, patients have a normal life expectancy.

What aggravates PMR? ›

Increased weight puts more pressure on the muscles and joints affected by PMR, which can make your pain worse. Some people may be intolerant to gluten, the protein found in wheat, barley, and rye. Excessive sugar intake is also inflammatory and may cause weight gain.

Does PMR affect the heart? ›

Aortic stiffness has been also found to be increased in PMR and institution of steroids appears to be beneficial (4). Although cardiac inflammation by CMR in inflammatory myopathies has been previously demonstrated (5,6), this is the first time that myocardial inflammation was identified in the setting of PMR.

Does PMR affect the brain? ›

In the control session, brain activity broadly changed, while the change was limited to specific parts of the cerebral cortex and limbic system in the PMR session. PMR gradually decreased activity in the superior frontal gyrus (SFG), inferior frontal gyrus (IFG), and posterior cingulate cortex (PCC).

What is the hallmark for polymyalgia rheumatica? ›

The hallmark of polymyalgia rheumatica is shoulder and hip girdle pain with pronounced stiffness lasting at least one hour. Inflammatory markers, including erythrocyte sedimentation rate and C reactive protein, are almost always raised at disease ontset.

Are fibromyalgia and polymyalgia rheumatica the same thing? ›

These two diseases are considered entirely different diseases, with PMR a systemic inflammatory disease and FM a non-inflammatory central sensitisation with generalised pain.

What blood test confirms polymyalgia rheumatica? ›

There's no specific test for polymyalgia rheumatica, but it's likely that a series of blood tests will be done. Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can be used to check the levels of inflammation in your body.


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