New here and frustrated and scared | Arthritis Information

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Hi all.  I was so glad to find this forum online.  I’m 61 and I was diagnosed with PMR on Thursday after being shuffled to different doctors for 4 months.  This past Thursday I saw a rheumatologist and he diagnosed Prednisone, 5 mg twice a day.  I was so happy to at least have a diagnosis and the thought of feeling normal again is more than I can say.  After seeing him I immediately went to the pharmacy and took one pill and then another at night.  I woke up Friday morning and even my husband mentioned that I even looked different.  I felt so much better.  He said the medicine can’t work that fast.    About 3:00 on Friday afternoon I started feeling the same pressure on the left side of my head, above my ear and it feels bumpy.  I didn’t have the shoulder problems or pain, just a headache.  By five I didn’t feel so good and took the next dose of prednisone.  Went to bed with a headache, also my jaw was achy, my tongue felt funny and the area around my eye just felt weird, hard to describe.  Anyway I woke up this morning and went and took another 5 mg prednisone.  I don’t feel as bad as I use to but it’s just under the surface, like you know it’s there and just waiting for it.    I still have the temporal tenderness and jaw is achy.

After reading this site I’m wondering if my dosage of prednisone isn’t high enough and could I have GCA.  Both my Sed Rate and CRP were elevated.  I guess I’m just scared that if it’s not PRM then what could it be?  The thought of feeling like I have been since July…well, I just don’t know what to do.    My fatigue has been so debilitating and last Monday I hurt so bad I just laid in bed and  tears ran down my face.  I was so happy to finally have a diagnosis even though I know the prednisone is nasty.  My son was on high, high doses for two years with Hodgkin’s.  But knowing is better than the alternative.   I like my rheumatologist.  First doctor since July that spent an hour with me.  Most of the time it was ten or fifteen minutes and here, go get these test done, don’t know what you have , go back to your primary. 

I’ve probably ranted way too long but I’m just frustrated and scared.  I’m looking forward to Monday so I can call my doc and find out what I need to do.  Thanks all for reading.    Just reading everyone's stories has helped and let's me know that I'm not alone or it's not "all in my head." 

Hello to you and welcome to the board.  Do not ever feel bad about ranting as that is what this support board is all about.  I am sure there will be others behind me to welcome and give you a helping hand.  There are some very knowledgeable people here one being MrsUK.
 
First off, I would advise you to talk to your Dr. about the headache as GCA could be a possibility.  Prednisone is what is prescribed for it.  It seems the standard amt. of prednisone for PMR is 20 mgs but some people have had higher amts. and others lower.  It depends on how you respond.
 
You seem like you are on the right track now and it is very important that you have a good relationship with your Drs.  Always remember that PMR does go away and that is one thing to focus on when things are not going well.  Any questions you have just ask away and someone will be here to help you out.
 
Take good care.
 
Pat
 
SoFlaLiving

Hi there and as TeedOff says, welcome aboard, although that welcome like TeedOff's is tinged with a bit of sadness.    You are in for some new experiences - buts that's life.

Please go this website - www.pmr-gca-northeast.co.uk and read the articles on GCA and also PMR and also the paper issued by the BSR on June 2009.

You can have both.  But the GCA is the one you must not play around with.  From what you say in your posting it looks like you have three of the classic symptoms,  headache, jaw ache - possible worse when you chew, tongue funny and eye weird.

I do not want to alarm you I just want you to seek help fast.   If the symptoms are not subsiding and are on the increase, I don't think you should wait till Monday.  Take yourself to the nearest accident and emergency centre, explain what it happening and ask that they check you out for GCA or Temporal Arteritis as it is also called. If it is GCA they will in all probablility up the dosage to at least 40mg and it could be 60mg.

Failing that get back to your GP or Consultant fast as soon as possible on Monday and do not be put off.

GCA if mis-diagnosed or not diagnosed can lead  to partial or total loss of vision and once that happens  - its gone.

Please do not hesitate, even if it ends up that I was wrong  - you just cannot take that chance.

Please let us know what happens.

Good Luck and I do so hope I am wrong and that it is PMR only.
Thank you for the warm welcome.  Sorry it took so long to get back on here.  My PRM symtoms are gone but have spoken with the doctor and he's upped my prednisone to 40 mg a day and I go see him next week.  I was still having headaches but in the evening and worse when I would lay down at night.  Also had sharp pains in the temple but they were quick and didn't last long.  Is this normal?    I'm looking forward to going in to see my doctor.  When I talked to him on the phone he said "we have a lot to go over."   I've been reading the horror stories on prednisone and have started an anti-inflammatory diet and really watching what I eat.   Going to take it one day at a time.  SoflaLiving

Do not worry about the 'horror' stories, not everybody suffers the same side effects, some people even lose weight and I know three of them.  Everyone's metabolism is different.  The pmr symptoms can disappear when you are on a high dose and the headaches etc should also subside rapidly.   Did you read the medical papers on GCA on the website?

Your on the way with a positive attitude that you are going to take it one day at a time.  Listen to your body  - its amzing what it can tell  you - and you know you better than anyone else.   You also sound as though you have a good Doctor.

Remember there is no known cause and no known cure  - pmr can burn itself out - but it decides when.  GCA bit more problematic.

Good Luck and hopefully, some calm waters.
 Its learning to live with it and taking it one day at a time.
It's taken awhile to get back here.   Been back to the doctor and he says it's Temporal Arteritis and PRM.  I didn't have a biopsy.  I'm on 40 mg of prednisone a day but I take it throughout the day.  Has anyone ever done this?    I take it in the morning, about six-thirty and then I take it about noon.   Went and got my hair done the other day since my roots were like an inch grown out and my appointment was at noon and forgot my meds before I left.  When the color was done and finally she cut it I said I've got to go.  Went home with wet hair.  Had to get home, felt so bad.   
 
Not sure what's going on with this but the doctor said everyone is different.  So I take another dose and then about six at night and then before bedtime which is about eleven or so.    I don't have an appetite on the prednisone, which is good I guess.  I've cut out all beef from my diet and salt.   Eating lots of veggies and fruit, chicken and fish.  No dairy, which has helped my IBS and gastritus.  So go figure.    The prednisone has given me so much energy or maybe it's just feeling good again after so long.  
 
The doctor did do bloodwork and I go back to get the results but I was home on Saturday and my phone rang and it was my doctor, if you can believe that, to see how I was doing.   He said my sed rate went down.   He didn't have all the results back yet.  Almost fell out of my chair.  Usually you can't even get them on the phone and he calls me.   
 
I did notice that if I have any stress my symptoms seem to flair up.  Not that I have alot of stress, thank god for small favors.  Does anyone else have this?  So many questions....so few answers.   I am having trouble sleeping.  Maybe four or five hours a night.   I guess when I see him he'll help with that.  I also notice my vision does get a little weird.  Another question for him. 
 
But anyway, just ranting and raving here, as I said, so many questions....so few answers.    This is a great site just to learn from.  Thanks all so much.
Hi SFL xx  We girls must have our hair colour right!!!! Understand completely, my only vanity left! Makeup runs, hair dripping, face fat and sweating ect ect....Enough doom & gloom.
 
High doses of Pred turn you into 'Super Woman' and so pleased to be pain free as well.
I have felt on many occasions I would like to take a big dose for a few days just to get that Fix! But NO I did'nt cause you have to come down again. I have not had " an appetite " but have still managed to put on horrible excess weight, with me I think it is also the lack of excersise.
You have cut a lot from your diet. I hope you are careful about having enough calcium and Vit D. Unfortunately our friend Pred can/ does  turn nasty and leach our bones ect.
You are very fortunate to have a caring Dr. That is wonderful for you and sure helps keep that stress level down.  Yep stress does not help when trying to deal with PMR. I certainly just shrug off things I woud have once got upset about.  I have learnt the end result is still the same so Breathe.........( I don't always practise this XXx)
Sorry you have GCA as well as PMR ,
Hugs Lyn
Hi again SFL

I have GCA.

Everything I have read on the medical side of things, recommends that you take the whole dose in the morning, after eating something.

I started on 60mg and am now down getting down to 6mg slowly.

Your sed rate is ESR (Erothocyte Sedimentation Rate) and when on a high dose, it will go down.  People without GCA generally start of 20mg or below.

GCA is different  - you either start on 60mg or 40mg  - the marker for GCA is the CRP test.  Creatine Re-active Protein.

Keep a diary of each rate from now on.  I still have monthly blood tests after three years.

Read everything you can about GCA - did you visit the website?

As had been said, steroids leach calcium like mad - so I would think cutting all dairy products is not a very good idea.   Try pure dairy products, ie butter thinly spread,  cheese (matchbox size each day) low fat yoghurt preferably organic. etc.  You are better with a balanced diet than cutting everything out.

Also ask for a Dexa scan to confirm your bone density now  - then after a year have another and see what is going on.

I also was referred to an opthamologist and got a marker for my eyes  - I have six monthly eye tests.  So a visit to an optician is to be recommended.  They all know about GCA if they are good opticians - so ask the question  - Do you know about GCA.  If not find one that does.  Remember once you lose partial vision its gone. Your GP probably knows this and that's why you have a good one.


Keep coming back and asking the questions and good luck






Mrs UK  Thanks for all the info.  I've had the bone density and my bones are okay.  Dr. put me on Calcium with Vitamin D.    My reactive protein was 8.48 when I saw him the first time and he took another test the other day and will get the results back when I go in.  The only dairy I do now is butter with my veggies.  Cheese tends to really mess with my IBS but maybe I'll try some yogurt.       I did try the initial dose 40 mg in the morning but then by afternoon I could feel symptoms so he thought to try this.   I sometimes think my body tends to react differently.  For two years I had nausea and they did all the test but finally had a gall bladder test done and guess what?  It wasn't working.  I think it was working at like 6% but had no pain, just nausea.  So go figure.    My husband is going to eye doctor tomorrow so I'll go with him and ask about getting eyes checked.    I did check the website out and also my health insurance company has a health coach and she sent me all kinds of information.     Reading about everyone on here truly helps.  Again, thank you for all your info.

Just an update here.  Seeing my doctor every two weeks.  Still on prednisone and starting to get the "moon face"...well, not quite but it is filling out.  Does take care of wrinkles though.    Haven't gotten the appetite associated with pred and have even lost some weight...go figure!!!  But it feels sooooo good to feel good again without pain.    I keep a log going of questions to ask the doctor but he is a sweetheart and so patient with me and all my questions.  So basically taking it day by day and with all my energy getting stuff done I let go for awhile, a long while.  Do want to ask how long before I have to start lowering my dosage.  Am having trouble with ringing in ears and going to make an appt with ear doctor next week.  I've had that before but not as bad.  All in all just taking it a day at a time and hanging in there.  Again, great to be able to come here and read and learn.

SoFlaLiving

Good that you have not got the appetite and long may that last.   Some people don't put any weight on at all.  But then not everybody gets all of the side effects thank goodness.

Lowering dosage will be discussed with  your GP, and he will probably go by the results of the blood test and how you feel.   The aim will be to get  you to the lowest dose at which you remain comfortable with. 

That's odd, my 'glue' ear came back when I started on the steroids and then it cleared up and it was odd as a liquid steroid was the treatment.   Us mortals are odd things.

Just keep on taking it one day at a time and learn to pace yourself by listening to yourself.



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