PMR or Lime Disease?: Visiting my sister in Boston... - PMRGCAuk

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PMR or Lime Disease?

Sandy1947
Sandy1947

Visiting my sister in Boston and she says the blood test I had for lime disease is only 50% accurate and thinks I should pursue this further since symptoms are similar to PMR. My doctor ruled out lime disease. On 20 mg of Pred I still wake up with intense shoulder pains at 3:30 am (took 5 mg Pred at 6:00 pm the night before). Get somewhat better during the day. Still have high ESR and CRP levels. Joined this party 6 weeks ago!

42 Replies
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Do you have any of the vascular symptoms in the head?

Sandy1947
Sandy1947 in reply to Aleish

No. I did have Bell's Palsy about 18 months ago but I fully recovered.

I live in NYC, too, and spend weekends in the Hamptons. I have a Lyme's test every 3 months, even before PMR. There's no harm in it. Your insurance may not ocver it, though. Talk to your doctor.

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

The test for Lyme disease is only 50% accurate. That is my concern.

GOOD_GRIEF
GOOD_GRIEF in reply to Sandy1947

We only have the tools we have. You are at higher risk for Lyme's if you frequent places where it is present. That typically doesn't include most of NYC only Staten Island has a significant and permanent deer population).

If you are concerned, talk to your doctor about getting the tests described in this link: lymedisease.org/lyme-basics...

If you or your doctor seriously suspect Lyme's, go for the bacterial culture test.

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

You are a genius! Are you in the medical field or just do a lot of research?

GOOD_GRIEF
GOOD_GRIEF in reply to Sandy1947

Hardly a genius. Just old, experienced, and know a lot of people from all over the place.

Just to be clear, you can only get Lyme's disease from a deer tick, which automatically means you have to be in an area where deer herds live.

They're not often seen on the subway! And the reindeer in the Macy's parade and the Rockefeller Christmas Pagent don't count. (haha)

Best of luck.

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

I also have a house in the burbs in NJ. Never a herd but occasionally 4 deer in the backyard...my dogs bathroom. Didn't see anything on fluffy Joey but who knows.

Thanks for the laughs! You made my achy day!

GOOD_GRIEF
GOOD_GRIEF in reply to Sandy1947

Just so you know, people who care about you will tell you all kinds of things they hope will make you feel better. They feel helpless and they want so much to help.

Don't stress about everything they say. Be gracious, say "Thanks", listen to your body, and listen to the science.

Then tell them if they really want to help, they can vacuum, haul groceries, wash windows or scrub the tub while you make them a nice cup of tea.

Stay cool. It's going to be another scorcher out there for us today...

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

Thanks for your words of wisdom. My sister does do all those things for me. We are taking short outings, she is preparing wonderful meals. I have become so finicky with my food. Call me Felix zinger! The focus on lime disease makes me feel like I should act on it. I'm too tired to add one more thing to my list!

Stay cool!

piglette
piglette in reply to GOOD_GRIEF

The Lyme disease tick can also live on mice, sheep, chipmunks, gray squirrels, opossums and raccoons, as well as deer. There was a program on TV a week or so ago about the ticks which was fascinating.

GOOD_GRIEF
GOOD_GRIEF in reply to piglette

Not a lot of sheep, chipmunks, possums or raccoons in NYC and its environs either...though we do have grey squirrels...but they also have to be in contact with deer herds to pick up the ticks.

Sandy1947
Sandy1947 in reply to GOOD_GRIEF

Sick of Lyme talk! Walked 2.9 miles while shopping in an outdoor mall. Could only go into a few stores. Giant salad for lunch, in bed for rest period. Doc said I could go up to 25 mg Pred. Thank G-d.

So, no jaw pain. scalp pain or temple pain. What about headaches?

Sandy1947
Sandy1947 in reply to Aleish

No headaches. Just intense shoulder pain. Thinking of asking doc for more than 20 mg of Pred. I think she is keeping dose low because of osteoporosis.

PMRpro
PMRproAmbassador in reply to Sandy1947

Your shoulder pain may not be entirely PMR - I get shoulder pain from myofascial pain syndrome which responds better to local steroid injections and manual therapies then to oral pred.

Sandy1947
Sandy1947 in reply to PMRpro

Never had shoulder pain before PMR diagnosis. Pain is bilaterl but worse on left side. Dr. said I could go from 20 to 25 mg Pred. I'll take 15 mg at 5:00 am and 10 mg at 5 or 6 pm. Extreme morning stiffness my be because I don't move from set sleeping position (right side with left arm on a pillow). Let's see if 5 mg makes a difference.

Have a good weekend.

Sandy, the shoulder pain would concern me, You might need to have a scan of your aorta to just be sure it's not vascular. Did anyone suggest a biopsy ? If it's vascular you are on too little dosing. There is an excellent doc at one of the good hospitals in Boston. I'm originally from Boston and if I don't feel that the next doc I see is good I have thought of staying with family and looking into my treatment in Boston. I have the notes elsewhere and in bed now but will look it up if you want the doc name.

Sandy1947
Sandy1947 in reply to Aleish

Thanks. I had a biopsy to determine GCA and it was negative. Results are meaningless because I was already on steroids. Doc is keeping Pred dose low because of my osteoporosis. I am 5' 2, weigh 102, look like a pencil and am losing a little weight since I eat 6-8 times a day (protein, vegetables, fruit and low fat dairy).

Do you think I should ask for more Pred? I'm trying to tough it out but since my markers are high, I am a bit too tired to fight. I'm seeing her 7/31. Also started experiencing wrist pain in right wrist. New day, new surprise. I don't remember signing up for PMR!

Had double vision which is a pre existing issue. Doc at Columbia said it is caused by inflammation. She emailed Rheumie stating I should be on way more Pred (she suggested 60-80 mg) but Rheumie wants to stay the course of 20 until apt. I do trust my dr.

What is the doctor's name in Boston? Are you in NY city?

I appreciate your input. Couldn't make it without the forum. My sister wants me to put on a happy face and leave PMR in NY and NJ. Great idea.

Aleish
Aleish in reply to Sandy1947

I think I have had PMR for at least 7 years and until it must of become GCA I was treating it as fibromyalgia. When sed rates went up over a year ago and I really became bedridden and needed Vicodin and 4 Tylenol just to get out of bed and possibly on an errand with my husband driving , I knew things were bad. I also developed HBP and for a small women on a good diet, it was odd to not be able to get under control. Then the headaches were all the time and waking me from sleep and the scalp pain . Weird earlobe pain and earaches and the awful jaw pain when chewing. Also the eyesight was seeing double without glasses on. I'm sharing this because I could of gone blind or died. Just very early in treatment and going to third doc because first two rheumatologists were not treating correctly. I believe 20 percent of PMR patients eventually go into GCA. I wasted a year looking into myasthenia gravis diagnosis and obviously was clear. I never heard of the GCA until two months ago. My own research diagnosesd me but I kept my mouth shut when I spoke to

my immunologist and told her my symptoms and she saw my sed rate of 65. She then diagnisef me but did not treat the disease. My sed rates went down as soon as I started prednisone. Just be proactive and aware do you will not have the GCA set in. Good luck with your health. As bad as I am now, I feel I'm at least looking at a treatable disease. Before I had lost hope and thought the end was near.🌸

Sandy1947
Sandy1947 in reply to Aleish

Thank G-d you are on the right treatment path with GCA. You are the best diagnostician! PMR is teaching me to be proactive in order to get better. I am also a small woman and getting smaller. Since I can't control anything in my life but my diet, I have become a bit crazed. When I learned that Pred caused weight gain my vanity kicked in big time. Also, I became so finicky I could not look at certain food with out getting physically sick. At this point, I eat protein, vegetables and fruit. I had one glass of wine and 3 small pieces of whole wheat bread on Tuesday and went to the moon with pain Wed. morning. The same thing happened with whole grain cereal and eggplant and peppers in tomato sauce. Keeping it simple makes me feel better. I am normally 107 pounds, now 102.5. I'm 5'2". Size zero jeans are too big. I really look like a pencil. Will extra 5 mg of Pred affect my weight? Going to Nantucket from Monday-Friday. I'm scared to go to restaurants. I carried organic berries and apricots on the train to Boston. Apricots turned to mush, blueberries survived. My food is my new security blanket. I guess only 6 weeks into this journey is bringing out my neuroses!

Your story resonates with me. I pray you get the support, love and nurturance you need on this difficult journey. The open ended nature of the progress and set backs teach us lessons we haven't prepared for.

Thanks for sharing.

Rosedail
Rosedail in reply to Sandy1947

HI! I very much encourage you to do your best to incorporate some healthy fats like olive oil into your diet. I'm concerned that you may not be fueling your body with everything it needs to help you along this PMR path, and fat is a critical nutrient, especially for the brain. I'm not a dietician or a nutritionist though so perhaps best to consult with someone more qualified.

Sandy1947
Sandy1947 in reply to Rosedail

Thanks so much for your concern. I need all the help I can get! I felt great yesterday when Doc let me go from 20-25 mg Pred. Pain did hit my shoulders during the night. I have olive oil when I prep fish and vegetables for roasting and now I'll use it for salad dressing with vinegar. I am fat, sugar and carb phobic! I actually went from 102 lbs to 103lbs.Pred must hold water. Got new jeans! Shop in kids dept.! Is there a recommended PMR diet? I know I eat healthy...protein, vegetables and fruit. I tried oatmeal and whole grain cereal. Feel better with egg white omelet, cheese and veggies. I get sick when I look at white food..cake, crackers, bread!

Tell me about your journey.

sondya
sondya in reply to Sandy1947

Hi Sandy - from another Sandy - I was diagnosed with GCA in October last year. A biopsy of right temporal (minor) artery confirmed it. The hospital eye consultant said if it came out negative, she would recommend a biopsy of the left temporal artery. Sometimes it is difficult to get a positive result, so it would be prudent to question if a second biopsy is necessary. If CGA is suspected, it has to be dealt with immediately as it could result in permanent loss of vision in one eye.

I had all the tests, vascular, cardiac, ct scans, xrays, body scans. No sign of PMR and it looks like GCA localised to temporal area only. One of the lucky ones, I guess! Under the monitoring skills of a hospital rheumatologist, I am now on a plan of lowering dosage of Prednisone. And I stick to it religiously. No upping tabs or lowering at first sign of discomfort. Giving the body's adrenal glands (which produce sterioids) time to adjust. Blood tests are done once in two months and have to attend the clinic every two months to check bone density (a nasty side-effect of long-term steroid usage). So far, so good, everything has gone to plan. Both the hospital rheumatologist and my GP are very pleased. And I am thrilled that the disorder is manageable and (almost always) curable. I will be 75 next month, live in New Zealand (where hospital care is free) and play sport. Never had health issues before.

Keep well and smiling.

Sandy1947
Sandy1947 in reply to sondya

Sharing is good! It sounds like you are managing quite well. I increased Pred from 20-25mg... felt great on the first day then shoulder pain resurfaced the second day although a bit better than on 20 mg. The challenge is adjusting to different levels of energy. My day was done by 2:00 pm yesterday! Rest until bed time. I take a short nap before bed at 9:30 pm. I am also thirsty and am supposed to limit liquids to 32 oz. per day because I'm hyponatremic. I know I'm exceeding my limit.

What sport do you play? I love Zumba but haven't done it since diagnosis. Going to Nantucket today for vacation and classes are my goal even if I just stay for a little while. I know not to overdo anything.

I am so happy you are doing well. Stay in touch. You brighten my day!

sondya
sondya in reply to Sandy1947

Thanks, Sandy. I play petanque (boules) three times a week. Nice, easy sustained exercise, not exhausting and the company of friends is a huge bonus. It's supposed to be winter (in Auckland, New Zealand) but it's been very mild. Daffodils, magnolias are blossoming already.

Today, reduced prednisone from 8mg to 7. So what - to some, but to us - major joy and rapture!!

Keep well.

Sandy1947
Sandy1947 in reply to sondya

Thanks so much for your cheerful response! Flowers bring out the best in us. So glad you are reducing Pred.Every reduction is a milestone on the road to recovery. Saw my Dr. yesterday. New pain in wrist may be carpal tunnel. I may just see Orthodontist since I have osteoporosis. Dr. said to eat low carb low fat to avoid weight gain from Pred I did that, lost 4 lbs (103) and she didn't like that. I rat

Sandy1947
Sandy1947 in reply to Sandy1947

Thanks so much for your cheerful response! Flowers bring out the best in us. So glad you are reducing Pred.Every reduction is a milestone on the road to recovery. Saw my Dr. yesterday. New pain in wrist may be carpal tunnel. I may just see Orthopedist since I have osteoporosis. Dr. said to eat low carb low fat to avoid weight gain from Pred I did that, lost 4 lbs (103) and she didn't like that. I eat all day but fruits, protein, veggies and dairy

Reply

sondya
sondya in reply to Sandy1947

Hi Sandy. One day there was nothing, another day there it was: a ganglion at the base of my thumb. Pretty painful too. Doctor downplayed it with 'grin and bear it, it's on top of a major artery (or nerve?) and not prudent to do anything like surgery. It will go in time'. When I told friends, they pissed on my parade by showing me their ganglions!!! Some laughed and said in the old days they whacked these with a bible. The spectre of being chased by a hoard of bible-bashers was too much for me. The ganglion stopped hurting and has almost disappeared!

PMRpro
PMRproAmbassador in reply to Sandy1947

Cut the carbs - not the fat.

Sandy1947
Sandy1947 in reply to PMRpro

Thanks to your advice, I added a bit of cream to my oatmeal with walnuts, berries and hemp seeds. Dr. Is not happy with 4 pound weight loss. Added bread yesterday but woke up with a bit more shoulder pain before 5:00 am Pred dose. Improved ESR 39, CRP 14. Keeping me on 25mg split dose. Feel all calories go towards pain relief and fatigue management. Eating at least 4 meals a day protein, veggies, fruit and dairy. Added oatmeal daily. Suggestions. Weight is 102 height 5'2"

lymedisease.org/lyme-basics... Has good information about the different tests that can be used for lymes. Timing also matters. Some tests don't register it right after the bite but need a few weeks. I'd also look at what else could be causing the pain in your shoulders. It could be one of the add ons that comes along with PMR. Another thought is to try splitting your dose to make it through the night. So more in the morning, maybe 15, and the other 5 at night. I started that way (10/5 mg). Once I dropped from my initial dose I went to all in the morning but the doctor said that initially it helps clear out all the inflammation that had built up. I'm not sure where you are from but I see a rheumatologist who seems to be good compared to many described on here. He's from Yale but sees patients in Old Saybrook CT.

Sandy1947
Sandy1947 in reply to TooSore

I do split the dose as you suggested. I live in northern NJ and NYC. My doctor is at Columbia is well respected and in Best Drs. Of NY mags (not sure if that means anything). All my Drs.are at Columbia Presbyterian Hospital and they seem to deal with a lot of varying, complicated cases. Besides Osteoporosis I also have degenerative spondylolethesis and spondylosis. Just got records from Orthopedist for her to add to the mix!

I appreciate your help. Thanks for responding. Should I ask for more Pred or wait until apt. 7/31?

TooSore
TooSore in reply to TooSore

Hi, I went back and read your earlier post and saw that other people suggested the split dose already. In that post you mentioned weight lifting. If you are still doing that you may want to stop for a week or two and see if it helps. It may just be too much at this point in your journey. I'd also look into a massage to see if there's a tight muscle or knot that can be worked lose. I know it's been a warmer than usual July but heat often helps me.

Sandy1947
Sandy1947 in reply to TooSore

I lifted light weights for 15 mins. last week, doing minimal shoulders and did not continue this week. I can barely lift my left arm. Right shoulder is a tad better.

You are so right. I take a very hot shower at 4:0 am waiting for 5:00 Pred , get hot stone massage and walk (not as fast as pre PMR) in the hot, humid weather. Wondering about physical therapy but want to keep my life simple and get drugs right first.

Thanks so much for the support.

PMR typically responds to the dose you are on which is why I was suggesting it could be an add on issue. In your case could it be a complication to one of the other diagnosis? In my search for a diagnosis I saw a physiatrist who specializes in functional medicine. That type of doctor may be able to sort out which ailment is causing what and help figure out how to manage it all.

MGH rheumatologist is Eli milisofsky. Spelling? He takes care of GCA. If you have this you need to be on around 60 mgs prednisone for starters. I live in Boynton Beach, Fl.

Just a note for UK people you can also get Lyme disease from sheep 🐑 the ticks sometimes rub off on bracken then onto your socks/trousers.

Sandy, There is another hospital in Boston for GCA. Woman and Brighams have what's called the fast track clinic for GSA. You might want to research on your own and possibly see one of your choice.

Sandy1947
Sandy1947 in reply to Aleish

Thanks. I'm only in Boston visiting my sister. Live in NJ and NYC? I have PMR, thank G-d. Since I have osteoporosis doc only gave me 20 mg Pred. She raised me 5 mg yesterday 15mg at 5:00 am and 10 mg at 5:30 pm. I feel 100% better this morning. Was able to turn during the night, got up at 5:00 am instead of 3 and only have bearable shoulder pain. Improved vision! Markers were slightly better than CRP 99 and ESR 67 when checked about 2 weeks ago. Resting in Boston then Nanucket until Friday. See rheumie at Columbia 7/31. I feel I have finally turned the corner on my new friend, PMR. The thought of tapering scares the s___ out of me. I'll simply breathe and stay in the moment.

Enough about me. Please tell me all about you. How do you feel? Are you doing anything exciting this weekend?

I appreciate your help. Staying plugged in really keeps my spirit happy!

piglette
piglette in reply to Sandy1947

Hi Sandy, if you take it slowly when reducing you should have no problems. It is these doctors who insist on us rushing down to zero as quickly as possible when problems are caused. I had a rheumatologist who said I should expect a few flares, said by someone who had no concept what a flare was like. The trouble is we all listen to our doctors and try and do the right thing by them. Your doctor seems quite helpful so you are very lucky.

Sandy1947
Sandy1947 in reply to piglette

Rushing is not good! I am so glad I learn from you and others on the forum. I am pleased with my doctor and feel she considers all my health issues. There seem to be differences in UK and US medicine. My endocrinologist won't give me Proilio for osteoporosis because I'm on Pred. People in the UK on Pred take Prolio.

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