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Dr upping my dose!

Posted , 8 users are following.

sharon35553
sharon35553

Hi everyone, well its been like a storm hitting me, I've been on the 10 mil of pred for almost two months and suddenly yesterday scalp pain returns and chewing starts to hurt so today my Rheumy tells me that I definitely need to start taking 60 mil of pred immediately. The highest I was ever on when first diagnosedback in February with both PMR/GCA was 25, and I was immediately cured and felt perfect. Then I was slowly tapered down to 12 where I was almost perfect but now at the 10 the scalp and head pain coming back. Does anyone know how this high dose is, are there any bad side effects because I've tolerated these other doses with no problems at all. I'm so scared to go from 10 to 60 all at once but this Rhematologist group is excellent and I trust them so just scared as to what to expect.

Thank you,

Sharon

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH sharon35553

    Posted

    Sorry to hear that - it is a shock when you have been fine at much lower doses but to have reduced so low with GCA in 9 months is quite fast. A study showed that there is evidence of inflammation in GCA and other forms of vasculitis after 6 months at high doses of pred - that means over 20mg, and you weren't at that level anything like as lng I assume. Flares in GCA are common in the first 18 months I'm afraid.

    You will almost certainly be "wired" and sleeping will be difficult. It is at these high doses that the side effects are really likely - so weight gain is probable and you will probably develop the "moonface". But nothing is certain and many have avoided both by cutting carbohydrates drastically. However - none of the pred side effects are as bad as the potential side effect of GCA: loss of vision and that is why such a high dose is used in GCA.

    I have to say - I'm surprised he's going all the way up to 60mg if you don't have visual symptoms but he obviously feels it is necessary. Is it a different doctor from the one in February? 25mg is a very low dose to start you on for GCA.

    • sharon35553
      sharon35553 EileenH

      Posted

      Hi Eileen and thank you for such a quick reply. Yes it's a different Dr the first was horrible and tried to tell me it was smething else. This group is wonderful and they know I'm under the care of a Neuro Opthomologist also. He said just what you said, i was started on to low a dose. I normally weigh 100lbs so the extra 7 I gained thus far are no problem so thats not my worry, its the side effects. I was tempted to just go up to 25 mil all at once in the morning and see what happens but he is gung ho on the 60. He will see me next Wed also and will probably order more labs. I do have a cataract and was told its still small, he asked if I was having double vision or blurriness and I'm not. I have been having chewing problems and jaw pain with the scalp pain so hes probably being very cautious and he said he doesnt want any problems to occur over the next few days.

  • Devonmichael
    Devonmichael sharon35553

    Posted

    Hi Sharon

    I have gone from 40mg to 10mg my current dose over a six month period and not had any problems but I did ask my rheumatologist the hypothetical question, what action should I take in the event of a flare ? And was advised that I should move back up to the previous dose that was working (in my case 12.5mg).I think I have seen somewhere that the going back to the initial high dose is in the event of eye blurring not sure if it also applies to jaw claudication though.

    • sharon35553
      sharon35553 Devonmichael

      Posted

      Hi and yes you are correct, my Dr is being very cautious, he asked me if I was having double vision or blurriness and Im not, I do have a small cataract but its to small to remove yet. I have had sore jaw and chewing problems but the scalp pain is horrible and that is the tell all sign of GCA.

      Thanks for your reply!

    • EileenH
      EileenH sharon35553

      Posted

      "the scalp pain is horrible and that is the tell all sign of GCA" - like all the so-called typical symptoms, scalp pain only occurs in about 1 in 5 or less of patients as presenting symptom. You can have scalp pain without the eyes ever being affected - although scalp pain is probably more likely to elicit a positive TAB because the temporal artery is part of the blood supply to the scalp - other arteries are involved in the blood supply to the optic nerve. It's a VERY confusing illness!

  • koen1
    koen1 sharon35553

    Posted

    Sorry to hear this Sharon, but I went just through the same. Started with 10 mg went up to 20 in 4 weeks when I got fever, headache and eye problems. Was at 60mg for 4 weeks. Yes a little wired, but was able to go to work without too much trouble. Then down, 2 weeks 50, 2 wks 40, 2 wks 30, 1wk at 25 and the symptoms returned. Fever, headache jaw pain, sensitve scalp. Rheumy put me also bacl on 60mg.... Just got back to 50mg. Next week I will see the NP of the rheumy to check blood etc.

    It is frustrating, but so is being blind. The rheumies are not allowed to take that risk...

    • sharon35553
      sharon35553 koen1

      Posted

      OMG this is so confusing and my Dr said those exact words to me today, he cannot take the risk. I have a question, can I drive for three hours if I take the 60mil in the am, I am supposed to visit my kids tomorrow and have to drive myself. Has anyone had any problems driving while on the 60 mil?

      Thank you for your reply, it's greatly appreciated

      Sharon

    • koen1
      koen1 sharon35553

      Posted

      For me, this is the second time that I was on 60mg. It seemed to hit me harder this time than the first time, but taking all 60mg before breakfast in one go, I was a little wired, nervous, but not drowsy. I expect that the effect different is for different people. You should perhaps try a day before you start driving long distance. I have no trouble sleeping at night when I take it all in the morning.

      I also take a lot of coffee, the good stuff and that may have influenced me too.

    • sharon35553
      sharon35553 koen1

      Posted

      I'm starting tomorrow at 5 am but I have to leave around noon, so hopefully I will be able to make the 2&1/2 hr drive ok. I was afraid to start tonight because I too am used to taking very early at 5am with some cereal or toast, and if I had started tonight it would have been to close, 12 hrs apart and decided to start tomorrow fresh.

      I'm a tea drinker and never drink caffeine so this may or may not help me, time will tell.

      I thank you for this input!

    • koen1
      koen1 sharon35553

      Posted

      You should be fine tomorrow. I take my pred with a large glass of water and a heaping tablespoon of Probiotic yoghurt. Seems to work fine for me.

      Drive safe tomorrow and enjoy the family.

    • EileenH
      EileenH sharon35553

      Posted

      However - do try to reduce more such committments for a while. GCA is a serious illness and you need to rest as much as you can to allow your body to heal. 60mg pred is also a high dose - and has a major effect on your body.

      I keep saying it, but it bears saying yet again, GCA (and PMR) and stress make bad bedfellows - and driving is stressful, especially when it involves town driving or high speed drving on highways. And family visits can also be stressful - even if there aren't disputes, it is often inevitably busy and noisy and neither are easy to cope with when you are on pred. Pred may also affect your judgement - whether it affects driving-type judgement I don't know but it may make you snappy and so you tend to overreact in situations you wouldn't normally.

      Have a good journey!

    • koen1
      koen1 EileenH

      Posted

      Eileen, I think that is one of the problems with this disease. We seem to be fine most of the time, which makes it hard to take it easy, or evade stressful situations.

      So there was 8 inch of snow this morning and it is much easier for me to run the snowblower than my wife.

      Then there is the Christmas letter we mail with the card. Difficult to postpone.

      During the time of being sick we got 2 more grandchildren: 200 and 300 miles from here. There was a lot of driving, but for me that is never stressful. I like driving. 

      All I am saying it is hard to put your lives on hold for PMR/GCA if your are not in a direct flare-up.

    • EileenH
      EileenH koen1

      Posted

      Or in the very early stages - which Sharon is. If you had flu or needed an operation or broke a leg there wouldn't be a question in the first few weeks.

      There is no reason NOT to do things if you are able to without pay-back. Writing the xmas letter isn't a big deal - I did that after some protest redface - and I don't have any problem with driving all over Europe on long journey. But I'm rarely alone while doing it. And I wouldn't hestiate to stop and spend the night in a hotel if I got too tired to be safe.

      You don't have to tell me about not being able to put life on hold because of PMR, I've had it for over 12 years! But GCA in the early days is a very different matter - as is being on 60mg pred all of a sudden.

  • pam1793
    pam1793 sharon35553

    Posted

    Hi Sharon.  Sorry to hear about your reoccurrence.  I was diagnosed in March with GCA and started out at 40 mg Prednisone.  When that didn't help, I was kicked up to 60 mg.  I'm now at 16 mg, but have been back and forth several times before reaching my current dose. The worst part for me were (and still are, at times) the sleepless nights, weight gain, moon face which is now creeping into my neck area, and just emotional highs and lows.  I constantly feel bloated and like I've just eaten a huge meal. My rheumatologist had me drop from 60 to 40 before beginning a slow taper, but I don't know if that's what other doctors prescribe. 

    It is sad to read about all of us struggling with pmr, GCA, and having to deal with the nasty side effects of Prednisone. But, at least we're not alone in this fight, right? Personally, I can't wait to get off Prednisone some day. I'll be celebrating big time.

    Good luck to you and remember to be aware of any changes to your eyesight. 

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