PMRGCAuk
7,376 members12,095 posts

PMR since Sept 2017

After my original post, I think it was PMRpro that asked for a more indepth description of my journey. I have an appointment in December 2017 with my Rheumy and am wondering what questions I should ask. So here is my journey:

February 22, 2017 – Saw Dr Gio for pain behind my clavicle bone he ordered xays. (hips were hurting, ortho doc, Dr. Gio said bursitis) Took 10 mg of prednisone my husband had it helped tremendously.

Also began to wean off a new anti-depressant that my GP gave me. It wasn’t working as effectively

as the other and GP said I needed to wean off to go on a new one.

After about 3 days I started to feel the effects of weaning off of the anti-depressants, I have been on

them for 25 + years. I have these brain zaps, where I hear a zzzzt sound in my head. I feel dizzy and

nauseous. My train of thought gets interrupted and my co-workers tell me I get a blank look on my

face when I am experiencing this.

March 2, 2017 – CT Scan- Neck and soft tissue ordered by ortho, Dr. Gio

March 21, 2017 – Ultrasound for thyroid (ordered because the xray results of the clavicle noted that there were thyroid nodules).

March 30, 2017 – Needle biopsy of thyroid nodules. When doing the biopsy the Dr. switched to a bigger

needle. He poked me in the neck, possibly hit a nerve. It really hurt and I jumped.

It was after this appointment that the right side of my neck continued to hurt, even

though the biopsy site had healed. Pain then started to spread to different areas of

my body.

Still experiencing the withdrawal symptoms from weaning off the anti-depressant I don’t wish this on anyone. Still taking the Prednisone off and on, but trying to go a more natural route with turmeric, essential oils, fish oil, and vitamins.

May 10, 2017 – I was at work and waiting on a customer and was writing his address down and wrote half of his city and

couldn’t make my hand write the rest of the word. This is a city name I have written many many times. I

was still trying to deal with the hip, and clavicle pain and weaning off the anti-depressant. After work I

went to the Emergency room, based on symptoms and description of events the Dr. said I had a TIA,

Trans Ischemic Attack, or mini stroke. I did not suffer any speech issues, or body issues.

May 19, 2017 – Decided enough was enough I wasn’t getting this pain under control and went to see my GP (Dr. G

(set up appts for every 2 weeks). He prescribed Prednisone 5 mg daily, I told him I wouldn’t take

10 mg or above because I felt heart palpitations at that level. I was concerned about it because heart

issues run in my family. He said we would try the 5 mg and see how I did.

May 25, 2017 – Ct Scan ordered by GP, Dr. G to see if there are lesions, because he is thinking

possibly Multiple Sclerosis. Or if not that than also thinking possibly Fibromyalgia. Sent me for

bloodwork, ESR, ANA, CRP and Rheumatoid factor.

Levels were ESR: 11 mm/h (standard is 0-30 mm/h),

ANA: negative (tests 11 different antigens associated with systematic autoimmune,

CRP: 0.9 (standard is 0 to 0.744 mg/dl)

Rheumatoid Factor: < 10 IU/ml (standard <20 IU/ml)

June 12, 2017 – follow-up with Neurologist, Dr. Sherman from ER visit, he read my CT Scan report, from ER visit and GP CT Scan states there are no lesions, in his opinion I do not have Multiple Sclerosis.

Finally feeling like the anti-depressant has left my system, not experiencing any of the withdrawal

affects I was.

August 9, 2017 – Dr. G did some adjustments to try to loosen my body.

August 22, 2017- Dr. G did some adjustments to try to loosen my body. Referred me to a Rheumotologist.

September 19, 2017- Dr A, Rheumotologist- diagnosed with Polymyalgia Rheumetica, prescribed

Methotrexate 2.5 mg x 4 once a week and folic acid 1 mg daily. Wanted to increase dose of

prednisone from 5 mg to 15 mg, I said no because of the heart palpitations. So we settled at 7.5

mg daily.

States Methotrexate will help the Prednisone work better, folic acid, because some people get

mouth sores from Methotrexate. Rheumy did not blood tests as GP just did them. He diagnosed

based on my description of my symptoms and what I had done so far.

September 25, 2017- Follow up with my GP Dr. G. after Rheumotolgist appointment.

Asked Dr. G. about my concern/fear of Methotrexate and the side effects. Dr G states the Methotrexate

Tells the body to stop attacking the body and causing inflammation. The

Prednisone can then work better at reducing inflammation. I told Dr G. I was

scared of it. Dr G told me it will help me get better possibly faster and return to my more normal

life. So I decided to take it.

September 25, 6:00 pm – took Methotrexate, folic acid and 2.5 mg of Prednisone with dinner. Woke up at 3 a.m. to use

the bathroom. Very thirsty, felt like tongue and inside of throat were swollen, a little trouble drinking water.

September 26, 2017- Woke up mouth and tongue burning and tingly. Hurt somewhat to eat solid

Food or drink hot coffee. All my food tasted off. Nauseous. A lot of pain in my

Upper chest, shoulders and hips. Ringing in ears. Took 5mg Prednisone, vitamin B, vitamn d, fish

oil, biotin, Magnesium.

Burning and tingling lasted all day and still present at bedtime. Took 2.5 Mg Prednisone and folic

acid with dinner.

September 27, 2017 Burning and tingling in mouth gone. Pain and stiffness mostly in upper chest and shoulders.

Took 5 mg Prednisone, vitamin B, vitamin D, fish oil, biotin, magnesium.

Nauseous all day, pain all day level 5, off and on headache, ringing in the ears.

Appointment with ENT, Dr. Mucha, for ringing in ears. Nothing found physically that would

warrant ringing. Dr. Mucha states Tramazol can cause ringing in the ears. Dr. Mucha

recommends reducing caffeine, use of NSAIDS, Aspirin. The possible use of Lipoflavion has

been shown to help some of her patients with the ringing. Dr. Mucha also said that since a prior

hearing test shows that I can’t hear higher tones, my body may be trying to accommodate the loss

of hearing by ringing. Took 2.5 mg of Prednisone and 1 mg folic acid after dinner before bed.

Didn’t sleep well had trouble falling asleep.

September 28, 2017 – Took 5 mg Prednisone, vitamin B, vitamin D, fish oil, biotin, magnesium. Not doing well with the

Folic acid, feel nauseous, light headed, fatigued. Called Dr. Al’s, Rheumy’s office and asked about

not taking the folic acid, the lady I spoke to said she would leave a message for Dr. Altorok and

get back to me. (as of early morning Oct 1st still haven’t heard back from their office).

I decided I would not take the folic acid this evening, just took my 2.5 mg of Prednisone. Didn’t

sleep well, had trouble falling asleep.

September 29, 2017- Took 5 mg Prednisone, vitamin B, vitamin D, fish oil, biotin, magnesium. Feeling much better

without the folic acid, nausea gone, light headed gone, energy up. Going to forgo the folic acid

from now on. Supposed to take the methotrexate on Monday, I will take it and see if I suffer any side effects.

Took 2.5 mg prednisone with dinner. Didn’t sleep well, had trouble falling asleep.

October 1, 2017 - Took 2.5 mg in the a.m. (didn’t take the 5 mg, thought maybe I didn’t need it) Prednisone, vitamin B,

Vitamin D, fish oil, biotin, magnesium. Very sore and tired all day, very cranky and short tempered.

I was wrong I need the 5mg as well. Will go back to the 5 mg of Prednisone tomorrow with my

morning vitamins etc.

In the afternoon, Dr. A, Rheumy’s office called back and said to stop taking the methotrexate and folic acid.

Remaining month of October 2017 switched to taking all 7.5 mg (instead of 2.5 mg at night) in the morning along with my vitamin B, Vitamin D, fish oil, biotin and magnesium. Had the occasional pain if playing with my grandkids too much. Continued with my monthly massages. Slept better without the prednisone at night.

Had to go back on my anti-depressant, wasn’t really happy about that. But the thoughts got to dark.

Overall I feel pretty darn good.

November 2017 Feeling really good very little pain and stiffness in the mornings, unless I overdue (which I haven’t).

Feeling pretty energetic as long as I get 8 hrs sleep. Noticing my feet get really cold off and on, but the rest of me feels fine. And I have a lot of facial and lip numbness. And having trouble tasting anything. It was suggested by a forum to cut back on my vitamin B. I did and the facial numbness has diminished but not all the way gone. But taste buds are still off.

November 19, 2017- Woke with pain on the top of my right shoulder and down my arm, tingling in my hand. Pain in bicep area feels hot. Can’t lift arm above waist, can’t touch my ear, can’t touch the back of my neck, can’t reach behind my back. Feels better if I hold it across my body.

November 20, 2017 Saw GP, Dr. G. he said Subacromial bursitis, Rotator cuff impingement syndrome of right shoulder.

so he gave me a cortisone shot. It's been 8 hrs since the shot and I am experiencing Improvement, but still have a little residual pain.

It is now 7 days later and I am experiencing only slight twinges now and again. I have been under a little more stress as my mom has had a knee replacement surgery and my step-father is not as well and strong as he needs to be to care for her and I am an hour away. The day after she came home from the surgery (which was the next afternoon) I got her settled in at home and then I came home went to sleep and woke up the next morning all stuffed up, runny nose and coughing. I haven’t been able to go and care for my mom and help out my step-father because she can’t have sick people around her. Sleeping fitfully with my nose being plugged up. I am hoping to get to go help them by the end of the week.

My next scheduled appointment with the GP, Dr G. is November 29th to see how I am doing with the anti-depressant. (it’s going good). And overall pain.

December 12, 2017- have appointment with Dr A, Rheumy.

5 Replies
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Can I assume that you’ve had your thyroid T3and T4 levels checked? And TSH (thyroid stimulating hormone).

I recall my MIL mentioning lip tingling due to problems with her parathyroid. (Nothing to do with thyroid, they control calcium levels). Think it can also cause tingling in feet and hands.

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Soraya_PMR: Yes I have had my thyroid T3, T4 and TSH tested and all were in the normal range. Also my GP checked my calcium level and it is within the normal limits.

Thank you for your response I appreciate it.

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Good 👍🏼

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"States Methotrexate will help the Prednisone work better" - it MAY help you get the same result froma lower dose of pred. But it isn't guaranteed - and it really sounds as if mtx isn't your drug. It doesn't necessariy do what he says it does in PMR

But it sounds as if what you really need is a good rest from it all. All the very best...

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Yes thank you. A vacation would be wonderful.

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